The Backs of the Disabled and Those of Us Who Shirk Work*

This is the beginning of my Shirking Work days
March 8, 1996

So last night I was doing exactly what I shouldn't have been doing, which was scrolling through emails and Facebook. I was already in an agitated state over the National Prayer Breakfast and some un-bloggable things, but when I read the following article from the Congressional Budget Office (CBO), I thought I might combust.

I'm going to cut and paste the entire thing in red because it deserves the coverage, especially to those of you who put us in this position and who might be reading here:

Eliminate Supplemental Security Income Benefits for Disabled Children

Billions of Dollars	2017	2018	2019	2020	2021	2022	2023	2024	2025	2026	2017-2021	2017-2026
Change in Mandatory Outlays	0	-10	-11	-11	-11	-12	-12	-11	-13	-13	-42	-104
Change in Discretionary Spending	0	-1	-1	-1	-1	-1	-1	-1	-1	-1	-4	-9

This option would take effect in October 2017.

The Supplemental Security Income (SSI) program provides cash assistance to people who are disabled, aged, or both and who have low income and few assets. The Congressional Budget Office estimates that 15 percent of SSI recipients in 2016 will be disabled children under age 18, receiving an average monthly benefit of $664. Those children must have marked and severe functional limitations and usually must live in a household with low income and few assets.

This option would eliminate SSI benefits for disabled children. CBO estimates that making that change would reduce mandatory spending by $104 billion through 2026. Also, because annual discretionary appropriations cover SSI’s administrative costs, this option would generate $9 billion in discretionary savings over the same period so long as total appropriations were adjusted accordingly.

One rationale for this option is that providing SSI benefits to children may discourage their parents from working. Unlike Temporary Assistance for Needy Families, a welfare program that aims to help families achieve self-sufficiency, SSI imposes no work requirements on parents and does not explicitly limit how long they may receive benefits as long as the child remains medically and financially eligible. Furthermore, SSI benefits decrease by 50 cents for each additional dollar parents earn above a certain threshold, depending on household size and other factors. (For example, in calendar year 2016, for a single parent with one child who is disabled and with no other income, SSI benefits are generally reduced after the parent earns more than $1,551 per month.) Those program traits create a disincentive for parents to increase work and thereby boost earnings.

Another rationale for this option is that, rather than provide a cash benefit to parents without ensuring that they spend the money on their disabled children, policymakers could choose to support those children in other ways. For example, states could receive grants to make an integrated suite of educational, medical, and social services available to disabled children and their families. To the extent that funds that would have been used to provide SSI benefits for children were instead used for a new program or to increase the resources of other existing programs, federal savings from this option would be correspondingly reduced.

A rationale against this option is that this program serves a disadvantaged group. SSI is the only federal income support program geared toward families with disabled children, and SSI benefits reduce child poverty rates. Families with disabled children are typically more susceptible to economic hardship than other families because of both direct and indirect costs associated with children’s disabilities. (Direct costs can include additional out-of-pocket health care expenses, spending on adaptive equipment, and behavioral and educational services. Indirect costs for the parents of disabled children can include lost productivity and negative health effects.)

I'm calling out not just Drumpflanders, but Republicans, because literally the second you can, you go for the jugular. I don't give a flying foo-foo about reaching across the aisle or even trying to understand why the sick, the disabled and the most vulnerable bear the brunt of your political machinations, even as your precious corporations are allowed to poison our air and water, exploit workers, avoid taxes, make war and billions and billions of dollars in profits for an ever-shrinking group of people. 

Am I enraged? I am.

First of all, the rationale for "this option" is that providing SSI benefits to children may discourage their parents from working. Sophie gets a bit more than $640 a month in SSI benefits. This proposal would eliminate that benefit. As you know, I have been shirking work for more than two decades and would have to go out and get a real job. 

Even the rationale "against" that option is ridiculously simplistic, stripping everything but economics, the bottom line and the commodification of our children.

The Nazis came first for the disabled. Did you know that? This isn't rhetoric.

Let's say this doesn't happen. What you've done, Drumpflanders and Republicans, is inject the most intense panic and worry, on top of everything else that we have to deal with, into our bodies. Sit with that. You are indecent, immoral human beings if you support this.








*This is a clarification. I am grateful for the SSI money that Sophie receives every single month and use it to pay for unreimbursed medicine, therapies, clothing and incidentals for her. We receive that amount, thanks to a federal waiver that has deemed her care "institutional" -- meaning were I not to care for her at home, she would be institutionalized. In addition to SSI, Sophie qualifies for IHSS or In Home Supportive Services. I am paid minimum wage to care for her at home. I have no idea whether these funds will also go by the wayside, along with the Affordable Care Act. In addition to the entitlement programs, my parents help me by sending me money to help with childcare. They are in a position to do so, and I am beyond grateful and at once cognizant of how privileged I am. I manage to get freelance writing and editing work, as well as have my book salon and other entrepreneurial things. So, what I'm saying, is that I am panicked about the Repubs removing all these safety nets, and I am a fortunate person, at least for now. I worry about the long term future, though, and how I will continue to do what I do. It would be unethical and immoral of me not to use my talents and ability to articulate these things and to advocate for the tens of thousands of families less fortunate than mine. So that's what I'll continue to do. 

Thoughts (Not Rants) for the Day on Disability and Worth and the Supposed Welfare State

*** I'm re-posting this because I don't have anything to say today other than some paltry words about how weird it is to read of the ALS organization's request to patent the words "Ice-bucket Challenge" as their own and to continue to wonder how effectively they'll use the nearly $100 million dollars that they raised. Since my reservations about non-profit foundations and the way they conduct business in this country were met so vociferously and rudely the last time I voiced them, I'll stick to issues that I know of very intimately, like this one.

I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

The opposite of gratitude involves women behind veils

That's Door Number 9 at the Social Security Administration office where I walked today, pushing Sophie, for our 1:15 appointment. I had thought we were summoned to prove, again, that Sophie is still disabled, but we were actually there for a random review. Evidently, these happen randomly -- maybe once a year, or maybe every four months, you never know, the clerk told us. You'll come back separately to establish her disability for another year, she added cheerfully. I was in a funk from things unbloggable when I started out with Sophie, determined to walk it off. What I didn't realize was how far the building was and how difficult it was to push Sophie in the wheelchair part of the Duet bicycle and how hot it was outside. Can I reveal that I wept a bit behind my sunglasses? When I finally pushed through the doors and went through security, I was too overcome to even care that a tiny wizened old woman with what appeared to be a sheet wrapped around her head, shielding everything but her eyes, glared at me as she sat waiting. Well, I confess to recognizing perhaps a modicum of irony in her stare/glare, and I might have muttered freak in a veil in my mind, but I pushed Sophie past all the gawkers and collapsed. For some godforsaken reason, Sophie is choosing to withhold liquid today, so I spent the rest of the hour waiting and trying to coax her to drink from her sippee cup.

When the review was finished, we walked back home, and while I would have preferred to lie down on my bed, remove my sunglasses and have a good cry, I was kept alert and wired by the jackhammers digging the trench on the side of the house. But now I'm boring myself, so I'll call it a day.

Sayonara. 

May the force be with you.

Imagine That

Elizabeth Taylor as Maggie the Cat in "Cat on a Hot Tin Roof"

I know ya'll think of me as the Ellen Burstyn character in Requiem for a Dream, but what if I told you to imagine me as Elizabeth Taylor in Maggie the Cat's white slip, languorously standing in the doorway of my bedroom, come hither --

Do you know that the Powers That Be called this morning and cancelled the NEUROLOGICAL appointment? They acknowledged that they had gotten sufficient information from The Neurologist (Sophie's regular one) that I had directed them to call when in my former Ellen Burstyn mode and had decided that yes, indeed, Sophie was sufficiently disabled to warrant continued SSI.

Imagine that, my friend Jenni texted me earlier when I told her.

Yes, imagine that!

Thank the animal gods, thank the universe, thank my lucky stars, the good Lord, Jesus Christ, Allah, Muhammad, the Buddha, and Ellen Burstyn.

Thank Elizabeth Taylor for giving me an out.

Punch Drunk, Insane and Bitter, Part 2

I've posted the above photo of Ellen Burstyn as the diet pill-addicted mother in the creepy movie Requiem for a Dream a number of times because I absolutely feel like I look exactly like that (well, maybe exactly with dark hair) during certain trying times in my life.

Like this morning.

When you read this, I will be at a clinic somewhere in the hinterlands of Los Angeles, with Sophie. Sophie will be receiving a NEUROLOGICAL exam to ascertain whether she is, indeed, disabled and whether she qualifies and can continue receiving Supplemental Security Income. I wrote about this on an earlier post that you can review here, if you like. Scroll down through the other jibber-jabber to read specifically about the NEUROLOGICAL exam.

In my mind, I can put on my best Ellen Burstyn in Requiem for a Dream nightmare face and laugh maniacally about how the jig is up! Sophie is going to receive a NEUROLOGICAL exam, and our long eighteen plus years of pretending that those pesky seizures are more than fig newtons of our imagination is going to be revealed! It was a good run while it lasted! A crazy, kooky run! Hopefully, Sophie won't completely blow the show and start reciting Wallace Stevens poetry or do one of her amazing back flips!

In reality, I'll be taking notes to share with ya'll later today. I bet you can't wait.

Punch Drunk, Insane and Bitter

to Erika

Ellen Burstyn in Requiem for a Dream
I imagine that I look like this, often

One of the superlative benefits of having a child with a disability, particularly a seizure disorder, is that I've found and become friends with some of the funniest people on the planet. I don't think of myself as funny, but I do acknowledge a superlative sense of humor, particularly a dark one. I got two pieces of mail yesterday -- one in my inbox and the other by snail. The online mail was a cheery notice from the manufacturer of Onfi, or clobazam, the drug that warranted my 4,325,792 posts titled Drug Mule over the last couple of years. In a nutshell, it cost me just under $500 for a one-month supply with private insurance and $61 for a one month supply when I traveled to Canada or had a friend bring it to me. We currently get a one-month supply from a local CVS for $0 thanks to a grant we received from a beautiful non-profit organization that helps those having difficulty paying for expensive drugs. The fact that the beautiful non-profit receives large contributions from the manufacturer of Onfi who then, I imagine writes those donations off,  is beside the point. I'm just saying, as they say.

Anyhoo.

I got this notice from the manufacturer of Onfi that the company is now making scored tablets and a suspension of the drug. Here's a copy of the photo at the top of the email:

That's followed by a photo of the new scored tablet, but I can't copy it for some reason. Then comes some information about the drug itself: 

Use

ONFI (clobazam) CIV is a prescription medicine used along with other medicines to treat seizures associated with Lennox-Gastaut syndrome in people 2 years of age or older.

Important Safety Information

ONFI can make you sleepy or dizzy and can slow your thinking and make you clumsy which may get better over time. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ONFI affects you. Do not drink alcohol or take other drugs that may make you sleepy or dizzy while taking ONFI without first talking to your healthcare provider. ONFI may make your sleepiness or dizziness much worse. ONFI can cause withdrawal symptoms. Do not suddenly stop taking ONFI without first talking to a healthcare provider. Stopping ONFI suddenly can cause seizures that will not stop (status epilepticus), hearing or seeing things that are not there (hallucinations), shaking, nervousness, and stomach and muscle cramps. ONFI can be abused and cause dependence. Physical dependence is not the same as drug addiction. Talk to your healthcare provider about the differences. ONFI is a federally controlled substance (CIV) because it can be abused or lead to dependence. Serious skin reactions have been seen when ONFI is taken with other medicines and may require stopping its use. A serious skin reaction can happen at any time during your treatment with ONFI. Call your healthcare provider immediately if you have skin blisters, peeling rash, sores in the mouth, hives or any other allergic reaction. Like other antiepileptic drugs, ONFI may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any symptoms, especially sudden changes in mood, behaviors, thoughts, or feelings, and especially if they are new, worse, or worry you. Tell your healthcare provider about all of your medical conditions including liver or kidney problems, lung problems (respiratory disease), depression, mood problems, or suicidal thoughts or behavior. If you are pregnant or plan to become pregnant, ONFI may harm your unborn baby. You and your healthcare provider will have to decide if you should take ONFI while you are pregnant. ONFI can pass into breast milk. You and your healthcare provider should decide if you should take ONFI or breast feed. You should not do both. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements, as taking ONFI with certain other medicines can cause side effects or affect how well they work. ONFI may make your birth control medicine less effective. Talk to your healthcare provider about the best method to use. The most common side effects seen in ONFI patients include: sleepiness; drooling; constipation; cough; pain with urination; fever; acting aggressive, being angry or violent; difficulty sleeping; slurred speech; tiredness; and problems with breathing.

For more information, please see the accompanying full Prescribing Information and Medication Guide.

When I opened the email, I was in a mood -- one of those moods -- and it just struck me as funny -- an insane, bitter kind of funny -- that the mother and her child looked so damn happy about these new scored tablets. I immediately thought of my friend Erika whose daughter has recently been put on Onfi (and who also had some trouble getting it covered), so I forwarded it to her immediately not because it was useful information that might be of benefit to her, but because I knew she'd immediately think it was funny -- an insane, bitter kind of funny -- just like me. I wrote 

 Good news! I got this in my email inbox this morning, and it really brightened my day, especially the photo of the child playing with his or her mom! There's nothing like a scored Onfi tablet to make family life easier!

Erika replied:

Thank you, Onfi! And you have to be a Debbie Downer to care about those side-effects when you can so easily break these tablets in half! 

God, I love my friends. (And I know some of you reading think I'm terribly uncharitable and that I should be grateful for something here, but now's not the time and I'd rather stick an ice-pick through my eyeballs than be grateful to a pharmaceutical company).

The snail mail was a tidy envelope sent by the Department of Social Services and concerns our recent application for Social Security Benefits for Sophie. As you might remember, this process went a whole lot smoother than I had imagined, and I guess I sort of thought that the whole thing was complete (Sophie is getting a check each month), but evidently, there is still some necessary information that the government needs in its determination. Here is what the letter says:

Your claim for disability benefits under the Social Security Act has been reviewed and more information is needed about your condition. Therefore, it is necessary that you be examined, at NO COST TO YOU, by:

(they list the address of a medical clinic here)

An appointment has been scheduled for you on 09/09/2013 at 11:00 AM for a NEUROLOGICAL exam. Our agency will pay only for the authorized examination or test and for certain related travel expenses.

First of all, I did not put the word NEUROLOGICAL in bold type. They did. I found that hysterical because I'm weird like that.

NEUROLOGICAL!!!

I am of course wondering why we have to go through this NEUROLOGICAL exam since we already appeared in person and the woman who did our intake confided in me that Sophie would certainly qualify even if I hadn't brought her in person because of the extent of her medical records. I am of course wondering whether some people might go so far as to fake a disability as serious as Sophie's in order to get that million dollars a month from the government (and then roll the wheelchair down the ramp and jump into their Cadillac before roaring off). I even wondered whether this NEUROLOGICAL exam is being ordered so that someone somewhere has a job to do.

Sigh.

Anywho.

I guess on the ninth of September, I'll be keeping Sophie home from school to get her NEUROLOGICAL exam so that the government doctors can confirm that she is, indeed, disabled.

Reader, what are you laughing insanely and bitterly at today?

           

SSI -- Mission Almost Accomplished

So, if you've been keeping up with my efforts to obtain Supplemental Social Security for Sophie, now that she's eighteen years old, I am happy to report that the new debit card and first check has arrived. While the final approval will take around six months, Sophie is already eligible to receive the million dollars per month owed her, and I bought the pretty blank book pictured above to enter all of her expenses.

In all seriousness, I am so very grateful for the help Sophie is receiving from our government, from your taxes and mine and appreciate that this entitlement is one not afforded to many in this big, old world. A couple of years ago, I used to read and periodically scuffle with a very conservative lawyer blogger in Texas. I remember a post of hers where she paraphrased some politician or right-wing pundit as saying that those "on welfare" were never thankful enough for it. You know what they were talking about -- the welfare queens riding around in Cadillacs and using their diaper money to buy flat screen televisions, lazy and shiftless and unwilling to work, ungrateful for the cash raining down on them from our pockets. It rankled me then, but not in the way I imagine she or the pundit would want. I know, for a fact, that most of us receiving assistance would rather not have it be so, but that we are grateful beyond imagining for it. I imagine that it's the rare person who isn't grateful for any help at all taking care of their young adult with disabilities. We probably can't grovel at the world's feet, but it's pretty close.

For all of you out there who are waiting for your own children's 18th birthdays to come, hang on. The process was far simpler and more efficient than I had foreseen, another dreaded milestone that came and went with far less fuss and angst than I imagined.

A Saturday Morning List

1. The ladder outside my bedroom window and the boot right there at the top, where A Man is busy trimming the hedge between my house and The Neighbor's, prompted me to wish that it were Daniel Day Lewis' boot, the Daniel Day Lewis who played the main character in the movie version of Kundera's The Unbearable Lightness of Being. I believe his name was Tomas pronounced Tomash and he was washing a window on an apartment building, and he caught sight of the woman inside, and before you knew it he had climbed inside and then he had seduced the woman.
2. Anyhoo.
3. On the advice of a friend (one of my many drug mules who help me to ferry Sophie's meds from Canada), I have finally bought a copy of War and Peace and have decided to complete it by my fiftieth birthday in late August. So far, so good. I'm on page 14. 1021 pages to go. This is in lieu of losing fifty pounds by my fiftieth.
4. Anyhoo.
5. The Husband has a miraculous Saturday off, so we've already divvied up the baseball game duties. I'm signed up for the noon game with Oliver.
6. Sophie is on her third or fourth day of a liquid strike. We don't know what's wrong with her, and it's difficult to shake water and juice into her resisting mouth. We took her to the doctor and nothing, apparently, is wrong. She has no infection in her ears, throat or mouth, that the doctor could see. She has no fever. She has, evidently, a $220 virus. I've gone through the stifled panic that I usually go through when Sophie isn't feeling well or acting "normal," where I imagine that it's the beginning of the end for her. I woke up this morning, though, feeling not so great myself, so I'm excited that perhaps it is indeed a virus and not that some new neurological complication has begun and the next thing you know we'll be having to have a permanent IV line or feeding tube and the seizures won't stop, etc. And you thought I was so calm, so amazing, right?
7. Anywho.
8. I spent four out of five weekdays off-kilter due to potentially stressful activities -- the removal of my stitches, the SSI meeting, a job interview and the conservatorship meeting -- and each one went as well as it could go. I believe that calls for an open thanks to the universe and all those who made it happen. I am grateful.
9. Now, if only Daniel Day Lewis would climb through my window, everything would be perfect.

Applying for SSI, Day Four: Hooray for Big Government!

A story told in images with minimal explanation:

We waited, patiently:

And not so patiently:

We looked at the curious art hung on one wall.

Why? I wondered (about the art, not the wall or the wait)

It soon became apparent that our goal was to be called by someone from Door Number Nine:

This is apparently the uniform of the Social Security Worker in Los Angeles:

(the stilettos, not the flip flops)

We at last entered Door Number Nine and accompanied a very nice woman, also in stilettos, to her desk. She asked us a series of questions and typed so fast on her keyboard that it put my own considerable talents to shame. She was thorough, respectful of Sophie and me. She did ask me when her seizures started, and when I told her at three months, she asked why and I said We never found out, and she said We had a traumatic situation to deal with in our family this month and I said What was it? and she said Our 18 month old son had a febrile seizure, and I said, Oh, I'm so sorry and I know how stressful and awful that is, but he will be fine and she nodded and teared up a bit and then kept typing.

This calls for a bit of French, I think:

Quelle chance!

Non?

Or as Carrie might say (and you should buy her book!): There are no coincidences. 

We were out of there in a half an hour with an assurance from Our Lady in Stilettos that all was well. All total, we spent one hour and one half in the United States Social Security Office, an hour that included a thorough security check of our bags and persons, some outstanding people-watching, curious Asian art, a wonderful worker who did her job quickly, sensitively and efficiently, the new experience of helping Sophie to sign an X on several lines, and, of course, the crossing off the list of applying for Supplemental Social Security for Sophelia Bedelia.

I'd end this post with a rousing chorus of God Bless America!!! but I wouldn't want to make anyone have a heart attack.

Applying for SSI, Day Two

I'm not boring you, am I? I thought I'd make this milestone -- applying for Social Security Income for my disabled now eighteen year old daughter  -- more like a game and therefore not only educate you in the finer navigational arts of the disability world but amuse you, too. The photo of me is right after I had my eyes dilated this morning in an annual eye exam. I forgot to bring my sunglasses, so the doctor gave me that nifty pair that I wore for pretty much the entire morning and well into the afternoon. My eyes are dark, very dark, and at this 3 pm writing, they're still a tad dilated, and it's uncomfortable to look outside or even to read. I chose to use my time wisely, though, and work a bit more on the online application and make another call to the Social Security office. As I explained yesterday, I was on hold for nearly fifteen minutes and then quite suddenly disconnected. One moment I was listening to Neil Sedaka and the next just silence. The Neil Sedaka made me wonder if perhaps I'd stepped into some sort of time warp and had actually made the call in 1975 and was still on hold. Today, I dialed the number and nimbly made my way through the labyrinth and was then politely told by the machine to call back at a later time. There was no hold time, no Neil Sedaka, no love will keep us together. I waited five minutes and did the same and was told the same. Not even a think of me babe whenever, some sweet talkin guy comes around.

I forgot to tell you that earlier, as I made my home through my urban neighborhood, squinting through my sexy, curled sunglasses, I thought about the concept of dilation -- how eyes dilate in darkness to let in more light and then contract to protect the eye from too much of it. I thought, though, how the pupil grows larger and darker when light is needed and shrinks to a tiny pinprick when it's too much. Reader, do you follow me here? Does your mind grapple with such paradox on a continuous basis?





Applying for SSI, Day One

Applying for SSI, Day One

It's begun. I emailed Sally over at Maggie's World with a plea for advice. She wrote me back with her usual fantastic sense of humor, walked me through it, and so I began. I labored for nearly an hour on the computer, filling out one million boxes and simultaneously waited for nearly fifteen minutes on hold with the Social Security office trying to make an appointment. Given that I was disconnected mysteriously from that call and then felt faint at the prospect of filling out Sophie's various hospitalizations -- do I need to go through the files I have in that white filing cabinet in the kitchen or do I need to contact the miasma that is the administration of UCLA?  -- I've decided to dissociate from the "work" I did and change the sheets on my bed.

Reader, what are you up to?