Sunday, December 30, 2007

2007 Year End Wrap-up, Part I

My extended silence blogside of the last few months is due to a variety of inter-related things: battles with 2 different types of insurance companies, learning more about the ins and outs of DME (durable medical equipment -- aka wheelchairs, crutches, and the like), becoming more disabled, tuning in to the political fray of the Presidential primaries, and turning 50. I've been trying to process these experiences and come out on the other side with some take-away lessons/messages, and am only moderately successful.

First Tale of Insurance -- The Long Term Care Variety

My employer, West Coast Ivy, offers group Long Term Care (LTC) Insurance for its employees at quite reasonable rates, as these things go. Years ago, I read Suzy Orman's advice that the best age at which to sign up for LTC insurance was 55.

In summer of 2006, I went to a local Book Fair, where a woman with a LTC booth told me I should apply for it immediately, and seemed in doubt that I could get it, even though my employer had the group plan.


In an uncharacteristic burst of naivete, I had thought that because of the nature of a group plan, I would not have difficulty being accepted for the LTC policy, and I applied for it in the Open Enrollment period of 2006, which was in November of 2006.

The initial application form asks questions about cancer, high blood pressure, heart disease -- in other words, the big, bad diseases, and whether you've been diagnosed with them. All "no". The only question with a "yes" answer was something like "have you needed mobility assistance in the last 3 years, such as a wheelchair or a walker?"

That "yes" prompted my first rejection -- to make a long story short, I went back and forth with them from 11/2006 to 9/2007, when they finally rejected me with no further opportunities for appeal. They said that they based the final denial of coverage based upon information they received from my primary care doctor and my dermatologist.

Ironic Twist

After the final denial, I was debating about whether or not to request copies of what my doctor's had said -- since the insurance company had already lied to me about what the report of a phone interview had contained, it seemed like it might be worth seeing what was said -- but I was pretty sick of the whole thing by then.

Before I could suck it up and write them yet another letter, my employer announced that for "this year only", all employees would be able to apply for the LTC insurance with no medical review -- i.e., guaranteed acceptance. This "guaranteed acceptance" also occurs within the first 30 days of hire for new employees -- but I was 37 at the time, and totally broke, and hadn't thought that would be my last chance to apply...

So, I applied again, in 2007's Open Enrollment period (for insurance year beginning 2008), and received a letter signed by Jody Ross congratulating me on my acceptance. Ms. Ross was also the signatory of the numerous letters of the past year's struggle, but she did not acknowledge this (it may well be a pseudonym -- I'd certainly use one if I had that job.)

Lessons Available, More Questions to Come

My boss, whom I had kept apprised of my struggle all year actually called me at home when she got the letter announcing this year's special acceptance policy. I spent the next month trying (with much success) to get everyone in our office to sign up.

For me at 50, the cost will be $100 a month, for the highest coverage available currently: $300/day, in an assisted-living facility, and $225 a day in my own home. There is a one-time 90 day waiting period; you must have lost the ability to perform 2 or more ADLs (activities of daily living) without "supervision" (to cover cognitive deficits) or assistance in order to trigger coverage. There is a built-in inflation provision, so that over time, both the premiums and the coverage will increase proportionately.

  • Why I fought the rejection/denial of coverage: Since it is a group policy, I thought (mistakenly, apparently) that there was a higher degree of insurability available to me as a member of a group. It turns out that most of the people in my office were rejected on the first level of application, for very different reasons: one person answered "yes" to having seen a psycho-therapist in the last 3 years, one person had high blood pressure.

In other words, LTC insurance is just like most other types of insurance -- they don't want to insure you if you have any degree of likelihood of ever collecting benefits. Therefore, if you are currently very healthy and have not been diagnosed with anything, but you think you have a reasonable chance of needing assistance down the road (even if the road seems very long now because you're still pretty young), you should at least consider signing up for LTC insurance now.

  • Did you know that the cost of the premiums of LTC insurance are NOT TAX DEDUCTABLE, nor can you use your Health Care Flex Plan to pay them? I was floored by this, as it seems to me there is a huge public policy interest in getting people to insure themselves for this kind of care. WTF?

  • The RN that conducted my phone interview (which was during the first third of my struggle) told me that they denied everyone who said "yes" to ANY of the questions on the initial application. This reminded me of the legendary rate of denial of first applications for SSI -- regardless of the documented level of disability. I asked her if she knew what percentage of people appealed this initial denial but she said she didn't know.

I think a tremendous number of people take "no" for an answer. I never really thought I could win this appeals process, but I also really bristled at the idea that they were denying me solely because I use a power wheelchair for mobility. That seems to me to be clear discrimination -- except for my mobility impairment, I am quite healthy, and do not and have not ever received in home support services. In other words, they denied me coverage without any additional information in to my diagnosis or prognosis. Early on, even thinking I would ultimately lose, I decided to make them work for it.

And, who knows? Maybe the number of rejections and complaints by my fellow employees might have led to this year's "free pass". I feel certain they didn't do it out of the goodness of their hearts.

More 2007 fun to come...

Thursday, August 16, 2007

Through Scott Rains' "Rolling Rains" I just found this cool link to a New Zealand website for crips and their families and friends.

I've only watched a couple of their videos, but THEY ARE COOL!

Ebates: A Painless Way to Save a Little Money

I am a dedicated online shopper -- I do as much shopping online as I possibly can.

I signed up with several years ago, and as of today, I've gotten $373 in rebates. They have over 800 stores signed up with them -- my only regret is that only offers coupons through them (Barnes & Noble does have a small rebate deal, though).

Click here to check it out. Yes -- full disclosure -- I will get $5.00 for people who sign up and use the service if you go through this link. But you too will get a "free" $5.00 if you sign up.

If you have a disability that impacts the whole shopping process -- which can be a whole range of disabilities -- or you just like avoiding crowded stores and witless store clerks, try the online process.

Some people are really afraid of giving out financial info online, but I have so far not had any problems using any of the stores through ebates. One of the things to keep in mind is that you have to start with the "portal" to do the shopping, or it won't track any of your purchases for the rebates. A couple of times, I have forgotten until the very last minutes, and have logged out and started over, just to get my rebate.

I think the average rebate is only 3-6%, but over time it adds up -- and seems like free money, when you get your rebate check in the mail.

Wednesday, August 15, 2007



In the Newsweek issue dated 2/18/08, there is a quote from Pat Buchanan, a "conservative pundit" from the "Today" show, in which Buchanan said of John McCain, "He will make Cheney look like Gandhi."

Now that's scary.

Thursday, June 21, 2007

Worthwhile Petition

This petition urges the Creation of a Disability Advisory Committee for the American Medical Association:

(Thanks to Wheelchair Dancer's blog for the heads up.)

Turning the Tables

Great video on YouTube! Check it out; it shouldn't require an explanation...

Friday, May 18, 2007

Petition in Support of the ADA Restoration Act

I wanted to draw your attention to an important petition that I recently signed: "Keep the Promise: Restore the ADA":

I think that the more attention we can muster to get Congress to keep the provisions of the ADA from going the way of other civil rights, the better. I'd like to encourage you to add your signature, too. It's free and takes less than a minute of your time. Thanks!

Monday, May 07, 2007

Another Great Voice in the Struggle

...Because make no mistake, we crips are still in the middle of the beginning, I think, of our struggle.

I wanted to point out this entry of Midlife and Treachery, which was posted (on time!) for Blogging Against Disablism Day on May 1st. Check it out.

Sunday, May 06, 2007

Disability Identity

(Many apologies to my fellow crip bloggers for the lateness of this entry -- last week really was a weak from one of the lesser circles of hell. This is my entry for Blogging Against Disablism Day -- May 1st.)

The Question

Sometimes, people will discuss the question: When defining yourself, which do you list first? I.E., a woman, a professional, a Baby Boomer, a law school graduate, a person with a disability, heterosexual, a "single", a pet owner, etc. While sometimes I think this is a frivolous question, I think it can also be extremely illustrative of not only how one thinks about oneself, but also how one's experience shapes that self-image.

The Answer

Years ago, either in my late 20s or early 30s, I figured out that if you answered this question based upon what factor/attribute has had the most impact on the totality of your life, then "person with a disability" was an easy, hands down winner as the first thing I would mention in defining myself.

No Hiding Possible

With my disability there isn't, and never was, any option to hide it or "pass". I've never not had it, since it is congenital, and the gene mutated long before I popped out and shocked the world and my parents with the odd appearance of my skin. Both adults and kids were scared of me -- so much so that I got shunted off into special ed, even though I could have managed the physical demands of a "normal" elementary school, with the one exception of p.e. I could read before most kids, and was extremely self-possessed. In the era before the IDEA, I wouldn't have needed any classroom assistance even if it had been available.

No, it was at the age of five that the discrimination began, and my parents colluded -- partly out of fear for me I suppose, and partly because they taught elementary school in my very district and didn't want to rock any boats. My parents -- with the best of intentions (although I personally despise the excuse for any bad behavior that the perpetrator is "well intended") made me feel that I must cover myself up (put your socks on, Pete is coming over) because I looked scary to other people).

The meta message was also that it was my job to make other people feel comfortable with me [since I was the different one]. There was never any indication that others -- children or adults -- had any responsibility to treat me with respect, even before they found out what was "wrong" with me.

My Question

I have a vivid memory of being nine years old, already in special ed, and asking one of the teachers, "Why is it okay to send me to a separate school because of my skin [my disability] when it wasn't okay to send kids who were black to separate schools?" This was the height of desegregation and the Civil Rights Movement -- the 1960s. And I remember that she just looked at me, with a mixture of exasperation and mystification.

I didn't enter the realm of non-segregated education -- meaning being counted on the same rolls as every other student in an educational venue until 1975 when I entered Community College, under my own steam.


Doctors never suggested a wheelchair -- or more appropriately, a power chair -- for me, even though the main problem with my disability was blistering on my feet, which was caused by...wait for it...WALKING! So, I walked with difficulty, until one day in special ed at the age of 11 or 12, I casually commandeered an extra manual wheelchair which I would use all day at school. I pushed it with my feet [some have likened this to Fred Flintstone in the old cartoons, and I think it is appropriately descriptive], but because my body weight was mostly in the chair and not on my feet, I was much more comfortable.

When I went on to high school (we were still on the rolls of the county's special ed program, but were more or less integrated for most of the day), I insisted that this spare wheelchair be kept in the "resource room" for me. I picked it up every morning, and an aide would take it back to the classroom for me when we boarded "the short buses" at the end of the day. Because the classrooms in which I took classes weren't set up with wheelchair accessible desks, I parked in the hall and walked in and sat in a "normal" desk. I didn't do this to feign being more normal, but because it was the only option that made sense to me.

The non-disabled friends I eventually made -- after a few years of being in classes with them and being a good student with a sense of humor -- were able to grasp the fact that I could both need a wheelchair and be able to walk.

Fast Forward

College, jobs, more college, law school, more jobs, independent contracting, losses, successes. Through it all, the crip card was always on the top of the deck, and not because I insisted on putting it there. That is another discriminatory concept that gets imposed on people with visible disabilities -- that if we acknowledge that people treat us differently, for good or ill, we have a chip on our shoulder. Maybe I do, now, but I didn't put it there in the first place. And it falls away very quickly when I sense that anyone I am dealing with isn't treating me in a "less than" way because I look different, and certainly am a far cry from the idealized standards of appearance that women are brainwashed into thinking as the only acceptable way to be in this society.

Romantic relationships -- pretty much off the table. Perhaps there is a guy out there for me, but I may not ever meet him. And I [mostly] made peace with that, at around 40.

Where it still makes me deeply, bone shatteringly angry is when I still encounter it in the workplace -- particularly with people I've known for a long time. It just happened again the other day -- a person above me in the food chain treated me disgracefully. And, I am certain, because she knows that I can't just simply quit -- I don't know how long it will take me to find another job, even though I'm very experienced and very, very good at what I do.

And why is that? Because of my disability, in part at least, always. I am a person with a disability -- first, last, always.

Friday, April 20, 2007

Blogging Against Disablism II

There's to be a second annual Blogging Against Disablism Day on May 1st. To participate or just get details, click on the pic:

Blogging Against Disablism Day, May 1st 2007

Thursday, April 19, 2007

Too Many Thoughts For Just One Blog

Mapping a Path Through the Nuances of Disability "Culture"

A close friend brought Lisa Ferris's Twinkle Little Star blog to my attention; in particular, this post, Lost in Disabilitakinstan.

It is literate, insightful and a dense commentary on multiple issues around the idea of the difference between the "non-disabled" world's cultural norms versus those of the disability community. It is so well thought out that I am thinking of taking bits and pieces (with atribution, of course) and then adding my two cents.

Be warned, Lisa doesn't break up her paragraphs often, and there is enough there for a long magazine piece; it is worth reading in its entirety.


Wednesday, March 14, 2007

Push for Equal Access to Technology

Interesting coalition of organizations (Coalition of Organizations for Accessible Technology Launched For Full Disability Access in the 21st Century) pushing an agenda of increased attention to access for persons with disabilities in the technological realm:

See the original press release at:

"WASHINGTON, March 13 /PRNewswire-USNewswire/ -- Get your COAT! Today, a new coalition of disability organizations was launched to advocate for legislative and regulatory safeguards that will ensure full access by people with disabilities to evolving high speed broadband, wireless and other Internet protocol (IP) technologies. The Coalition of Organizations for Accessible Technology, or "COAT," consists of over 45 national, regional, and community-based organizations dedicated to making sure that as our nation migrates from legacy public switched-based telecommunications to more versatile and innovative IP-based and other communication technologies, people with disabilities will not be left behind.
Emerging digital and Internet-based technologies can provide peoplewith disabilities with new opportunities for greater independence, integration, and privacy, but only if these are designed to be accessible. The guiding principle of this Coalition will be to ensure the full inclusion of people with disabilities in all aspects of daily living through accessible, affordable and usable communication technologies as these continue to evolve. To this end, and in order to achieve equal access in the 21st century, COAT has identified the following initial broad objectives:

* Extend current disability protections under Sections 255 and 710 of the Communications Act to IP technologies with improved accountability and enforcement measures, to ensure more accessibility, usability and interoperability for all persons with disabilities, including persons who are aging.

* Expand the scope of devices that must transmit and display closed captions under the Decoder Circuitry Act from the present requirement of television sets with screens that are 13 inches or larger to video devices of all sizes, including recording and playback devices, that are designed to receive or display digital and Internet programming.

* Apply existing captioning obligations under Section 713 of the Communications Act to IPTV and other types of multi-channel video programming services that are commercially distributed over the Internet.

* Restore the video description rules originally promulgated by the FCC in 2000 (overturned by the U.S. Court of Appeals for the D.C. Circuit) and ensure that this access continues in the transition to digital television programming.

* Extend existing relay service obligations under Section 225 of the Communications Act to VoIP providers (i.e., extend the obligation to contribute to the interstate relay fund that supports these services), including obligations for greater outreach to consumers.

* Require accessible interfaces on video programming and playback devices, such as televisions, VCRs, and DVD players.

* Ensure that people with disabilities have equivalent access to emergency information through identification of barriers and implementation of solutions in current and new technologies, including solutions for achieving access by people with disabilities to 911 emergency PSAPs through the receipt of text and video.

* Ensure universal service fund availability for persons with disabilities (e.g., Lifeline/Link-up programs), to increase the number of people with disabilities as broadband users.

The above objectives were recommended in a report released by theNational Council on Disability: The Need for Federal Legislation andRegulation Prohibiting Telecommunications and Information ServicesDiscrimination, available at (releasedDecember 16, 2007).

COAT MEMBERS* National organizations:

1. Alexander Graham Bell Association for the Deaf and Hard of Hearing
2. Alliance for Technology Access
3. American Association of People with Disabilities
4. American Association of the Deaf-Blind
5. American Council of the Blind
6. American Deafness and Rehabilitation Association
7. American Foundation for the Blind
8. American Society for Deaf Children
9. Assistive Technology Industry Association
10. Association of Assistive Technology Act Programs
11. Association of Late-Deafened Adults
12. Communication Service for the Deaf
13. Conference of Educational Administrators of Schools and Programs for the Deaf
14. Deafness Research Foundation
15. Deaf Seniors of America
16. Gallaudet University
17. Gallaudet University Alumni Association
18. Hearing Loss Association of America
19. Helen Keller National Center
20. Inclusive Technologies
21. International Center for Disability Resources on the Internet
22. National Association for Parents of Children with Visual Impairments
23. National Association of the Deaf
24. National Black Deaf Advocates
25. National Catholic Office of the Deaf
26. National Court Reporters Association
27. National Cued Speech Association
28. Registry of Interpreters for the Deaf
29. Speech Communication Assistance by Telephone, Inc.
30. Telecommunications for the Deaf and Hard of Hearing, Inc.
31. USA Deaf Sports Federation
32. WGBH Media Access Group
33. World Institute on Disability

Regional and Community-Based Organizations:

1. Association of Late Deafened Adults, East Bay - Northern California
2. Center on Deafness - Inland Empire
3. Deaf and Hard of Hearing Service Center, Inc. Fresno
4. Deaf and Hard of Hearing Service Center, Inc. Roanoke, Virginia
5. Deaf Community Services of San Diego, Inc.
6. Deaf Counseling, Advocacy and Referral Agency, San Leandro, CA
7. Greater Los Angeles Agency on Deafness
8. Hearing Loss of Northwest Indiana Support Group for Hoosiers
9. Northern California Center on Deafness
10. North Carolina Governor's Advocacy Council for Persons with Disabilities
11. Northern Virginia Resource Center for Deaf and Hard of Hearing Persons
12. Orange County Deaf Equal Access Foundation
13. Roanoke Valley Club of the Deaf
14. San Diego - Hearing Loss Network
15. Tri-County GLAD

* Members as of March 12, 2007

SOURCE Coalition of Organizations for Accessible Technology

Monday, March 12, 2007

The "Poor Thing" Syndrome

It is no exaggeration to say that I rarely have the thought, "poor thing", in reference to a fellow human being. It is, I think, a descriptor that is (probably) oft and inappropriately applied to moi, by people who don't know me. If anyone who did know me did think of me as a "poor thing", I know that they would never tell me to my face -- not without risking injury.

So, it was with some surprise that I found myself applying this "poor thing" appellation to someone I saw a couple of weeks ago.

Setting the Scene

I was leaving work, still on Ivy West's campus, barrelling out of my building in my power wheelchair, on my way across campus to the train station. Where our building's path intersects with a more general path, I slowed to go around a pedestrian -- and thought, "poor thing".

I have since seen this woman again, which confirmed my thought that she is a fellow Ivy West employee, walking to her car at the end of the day. She and I are of an age -- somewhere between 50 and 60, at a wild ass guess.

She clearly was in discomfort, walking -- my guess is an arthritic hip or knee. Like I said, we're of an age.

But, I thought "poor thing" because she was moving slowly, clearly (to me) in pain. And I, more disabled by pretty much anyone's standards, was happily zipping along, not particularly in pain (I'm never completely discomfort free -- but who is?).

And then I thought,

I wonder if she is thinking the same thing -- i.e., "poor thing", about me.

And Now for Something Completely Different...

Not really.

Just wanted to point my faithful readers to a new blog I'm initiating, The View From Where I Sit -- NEW . I'm just combining a couple of other failed blog attempts to branch out -- a place to write about non-disability issues.

My first entry is a brief book review -- I hope to add more, more consistently.

If only my day job didn't take up so many hours in the day...

Thursday, March 01, 2007

I Know The Type

In checking on Charles Dawson's blog (The Meanderings of a Politically Incorrect Crip) today, I followed a provided link to this, Anne by Colin Cameron. Go and read it -- I'll wait.

Like many crips, I suspect, particularly those of us in the biz -- the service provision biz, that is -- I found myself feeling both angry and sick when I read Cameron's piece. We have been on the receiving end of services provided by "Anne" and her ilk; or we have interviewed for jobs with her, or she has been a co-worker.

In fact, it brings to mind a co-worker of a few years ago (a saint in the minds of many), I'll call her Lucy. Lucy had been a Voc. Rehab. Counselor, and a provider of services in the higher ed setting -- where I met her.

One day we were talking with our boss about interviewing candidates for an open position in our office -- a disability services office for students at Ivy West. One of the candidates had disclosed a disability, and Lucy said glibly, "Oh, we don't want anyone with a disability or with kids -- they'll be out sick all the time."

Seriously. Sitting there in my power chair, I just looked at her and looked at my boss, who looked suitably taken aback.

So many people -- I venture to guess far more women than men, but I don't have the numbers to prove it -- just fell into a variety of "helping professions" as the laws started mandating inclusion in education and later, in employment. Sometimes they were an unqualified crip in the right place at the right time. Sometimes they were social workers who wanted to "help the handicapped".

I can't say that they are all terrible, but I can say that 90% do more harm than good, when you add up all of the gains and losses for the "cause" at the end of the day.

Another "saint" I dealt with out of law school, was the Voc. Rehab. counselor -- the only one, apparently -- who handled law school graduates in San Francisco in the '90s. Even though I had graduated from law school, had worked successfully in business for over 10 years, had filled out reams of complex forms in my time, ad nauseam, she wouldn't let me fill out my own federal application forms, nor would she give me access to the names and phone numbers of the supposed leads she had for me.

As it turned out, every single one of the interviews she sent me on were "practice/informative" in nature -- meaning there was no job to be filled. But she didn't tell me that ahead of time.

Ultimately, I found my own job. But, my hatred of that woman is a vivid ugly memory to this day.

I insist on treating the students that I deal with as adults. I "help" by providing information, and advise based upon my own experiences. There are the laws and then there is the real world, and they only bear a tangental relationship to each other.

The don't call me Reality Check Woman for nothing.

Friday, February 16, 2007

Five Things About Me

Charles Dawson (The Meanderings of a Politically Incorrect Crip) sent me a meme recently (actually a while ago), and this is my response. Not being an experienced "meme" user, I'm not passing it on, but I get so much enjoyment from Mr. Dawson's blog, that I answer to express my appreciation:

  1. I play World of Warcraft. I am currently a 26th level human mage. I find killing pretend monsters very cathartic.
  2. I watch too much television.
  3. I have never been out of North America.
  4. I love to play bridge, although I haven't played for a few years.
  5. I built my first pc (a 286) with a little help from a friend.

So there.

Tuesday, January 02, 2007

Post Christmas Dickens

A friend sent me this and I just saw it today -- back to work, alas... Another great NYT op-ed article by Harriet McBryde Johnson:

December 25, 2006
Op-Ed Contributor

Alas for Tiny Tim, He Became a Christmas Cliché

Charleston, S.C.

DECEMBER at the Crippled Children’s School got tedious. Our schedule was packed with holiday parties, some of which made the newspaper. Whether the holiday benefactors were medical students, faculty wives, organized Baptists or Navy men, the drill was the same. We drank their punch, ate their food, acted nice and said thank you, never forgetting that some of these people might be back with serious money. There were some real needs.

Capping off the month was the unvarying Nativity play. We once considered doing the story of Scrooge. But who would be Tiny Tim? In that department, we had an embarrassment of riches: any of us could do his shtick and better. “Alas for Tiny Tim,” Dickens wrote, “he bore a little crutch, and had his limbs supported by an iron frame!”

Alas! A little crutch! An iron frame! In our world, the crutch-and-brace kids were the athletic elite. They picked up the stuff we hard-core crips dropped.

If Tiny Tim got more fuss than he deserved, we didn’t blame Dickens. We figured Tiny Tim had Dickens snowed. He even had his parents snowed. Look at what his father says when his mother asks how Tiny Tim behaved in church:

“As good as gold, and better,” says Bob. “He told me, coming home, that he hoped the people saw him in the church, because he was a cripple, and it might be pleasant to them to remember upon Christmas Day, who made lame beggars walk, and blind men see.”

Tiny Tim knew how to give an audience what it wanted. He was ancestor to all telethon poster children and the perfect model for our holiday-party behavior. He joins in festive singing — plaintively. He cries hurrah — feebly. He says, “God bless us every one!”

Tiny Tim, like some of us, was ostensibly doomed. “A Christmas Carol” teaches that no one, not even a real scrooge like Scrooge, can resist the appeal of an ostensibly doomed child.

People ate it up and still do. As heart-melting poster children come and go, Tiny Tim lives on. When a theater company in my neighborhood recently announced yet another production of “A Christmas Carol,” I decided it was time to reread the story.

I approached the book in the spirit of know-thine-enemy. In fact, I found an awful lot to like. “A Christmas Carol” swings between warm and cold, soft and harsh, sensual and spooky. It panders to our prurient fascination with food. It also gives us dancing, singing, and the giddy exhilaration of sudden redemption.

Those crowd-pleasing trappings I remembered. What surprised me went a bit deeper: the story bristles with condemnation of wealth’s arrogance in the face of poverty. As the tale begins, Scrooge is not merely stingy and mean. He is a Social Darwinist. He believes in workhouses and prisons to meet the needs of the poor and in starvation to reduce the surplus population. While disability may make Tiny Tim’s life precarious, the story hints that privation is what would seal his doom.

As the ghosts show Scrooge the consequences of his actions, they also impeach him with his own philosophy. When Scrooge asks if Tiny Tim will live, the first part of the spirit’s response has become part of popular culture: “I see a ... crutch without an owner, carefully preserved ... if these shadows remain unaltered ....”

But the ghost goes on: “What then? If he be like to die, he had better do it, and decrease the surplus population. ... Will you decide what men shall live, what men shall die? It may be, that in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man’s child. Oh God! to hear the insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!”

The ghost’s point is still worth making in our time, when some of the people who consume most of the world’s resources hold disabled lives cheap and begrudge the “too much” of the poor. Through the ghost, Dickens cries for justice for millions.

But he lets that cry be overshadowed by the sweet melodrama of one ostensibly doomed child. In the end, the story’s overriding directive, cherished in today’s holiday hullabaloo, is to take time off work and celebrate with family, and from our abundance to toss some holiday merriment at the less fortunate.

The genius of most successful propaganda is to know what the audience wants and how far it will go. Perhaps, marked by his own family’s experience of the poorhouse, Dickens hoped Tiny Tim would inveigle holiday benefactors into making feel-good gestures and then returning to address the real needs. Perhaps Dickens hoped charity might prove a catalyst for something beyond charity.

But then and now, the season of giving is about the feel-good gesture. Holding a party at the Crippled Children’s School is so easy, so immediately satisfying. It is much harder, the prospect of reward often so remote, to seek justice for our sisters and brothers in the dust.

Harriet McBryde Johnson is the author of the memoir “Too Late to Die Young” and the novel “Accidents of Nature.”