On Medi-Cal - or not

It’s the waiting game, and I know a lot about playing it. I’m playing it now.

I went back to Casa Colina Hospital a couple weeks ago as part of an evaluation for a getting speech device - the Vmax by Dynavox. (See April 7 post.) This was the last appointment in the process, and now comes the hardest part.

Yep - waiting for Medi-Cal to approve - or not approve - my getting a Vmax (a reader has told me that "the device" sounds like a disease).

The three therapists who have now seen me - I have a team! - have (hopefully) written a report, endorsed by my physician, arguing why I should have the Vmax and submitted it to Medi-Cal. (The report was still being written as of last week, when I was called with a question.) I have been assured that my case is strong (gee, why do I feel like I’m on trial?). I’ve also been told that it will take only about a month for Medi-Cal to process the request, which, based on past experience, I find hard to believe.

Actually, the appointment two weeks ago wasn’t about the Vmax. It was about my wheelchair. The two therapists who had seen me were not happy with my chair, and so I had this appointment with a physical therapist and a wheelchair vendor. I went with some trepidation, fearing that they would want to get a chair in which my movement would be severely restricted, and I took a note explaining in detail what I want and don’t want in a chair and why I like the kind of chair I have. The P.T was completely cool, agreeing with my assessment. She had me get down on a mat, and I said I hadn’t been looked over so carefully since I was about 10 - literally. The wheelchair vendor was a rather amusing, opinionated woman who couldn’t get over how dirty and gross my chair was. (Okay - I’ve had it cleaned!) It was agreed that I should keep this chair and have it remodeled, with the back moved back, so I’m not thrust forward with my legs splaying, etc., and with more supportive footrests and a better cushion.

I was told that it will take several months for Medi-Cal to process the request for this remodeling, which makes more sense to me. It also fits with what a few people I have spoken to about this have theorized - the is, that Medi-Cal is more likely to take longer with and perhaps deny requests that are more common. In other words, unlike with a wheelchair or wheelchair repairs, it is easier to get a Vmax, despite its high expense, because the demand for it isn’t high. This sounds backwards, but it makes weird, logical, bureaucratic sense. (I was once told by Medi-Cal that I couldn’t get a new wheelchair, because I was getting too many repairs on the one I had.)

This is probably what’s behind the decision to stop Medi-Cal funding for dentistry, except for extractions, when California’s finances got even worse last year. Everyone on Medi-Cal needs dental care, making the demand all but overwhelming and, thus, too difficult. Speaking of Medi-Cal not paying for dental care, I recently called the dental surgery center where I have work done (I have to be put to sleep) and asked what I would have to pay. The answer was a shock: $1,200.

I thought briefly about going to the free medical and dental clinic going on now at the sports arena in Los Angeles. Thousands of people are going there, many coming from far away and waiting hours and even days, and thousands were turned away when the clinic took place last year. Then I remembered having to be put to sleep (because of my uncontrolled movements). Besides, I don’t want to wait in that line. Am I spoiled? In any case, the pictures of people waiting in line and getting care in factory lines, all in one of the world’s richest cities, is an eloquent answer to the loud, angry questions about why healthcare insurance reform is needed in this country.

A thin - but saving - line

I was interested to read the obituary in yesterday’s Los Angeles Times marking the life of Dorothy Height, the black civil rights leader who died on Tuesday at age 98. Years ago, I saw her speak at one of the colleges here in Claremont, and I recall having only a vague sense that she was very important. (She did look very important, or at least grand, wearing a large, Sunday-best hat.)

Indeed, as was pointed out in the obituary, Ms. Height - she never married - was "overlooked" and "overshadowed" despite being considered to be the "Godmother of Civil Rights." Because of her gender, she was the seventh of a cadre of black civil rights leaders, including Martin Luther King, Roy Wilkins, James Farmer, John Lewis, A. Philip Randolph and Whitney Young, often referred to as the Group of Six.

Two incidents described in the obituary really caught my attention. In one incident, a police officer threatened her life when she defied his order to wait for a train in the "colored waiting room" rather than board with her white colleagues. "Don’t you go straight on that train or I’ll blow your brains out," the officer growled. Later, Roy Wilkins, one of the leaders of the NAACP, told her the she would have been dead if she was a man.

Perhaps being a woman was an advantage in this incident, but, in the other incident that stood out for me, it was a real disadvantage. In organizing the historic March on Washington, Bayard Rustin insisted that no woman should speak, arguing that women were part of all the groups represented. Ms. Height commented, "Mr. Rustin’s stance showed us that men honestly didn’t see their position as patriarchal or patronizing. They were happy to include in the human family, but there was no question as to who headed the household!"

No doubt Ms. Height was thinking what I’m thinking: Bayard Rustin, of all people.

It is said that hate stems from ignorance, along with fear. I’d like to think that these two incidents show that hate and ignorance don’t always go together, that ignorance doesn’t always lead to hate.

Bayard Rustin was gay, and, because of this, he too was marginalized in the black civil rights movement. He knew what it was like to be even more of an outsider; indeed, he was once arrested for homosexual behavior. I’d like to think that, unlike the police officer at the train station, Mr. Rustin, who was also a Quaker, was simply being ignorant and not hateful when he denied Ms. Height and other women the opposite to speak at the Washington, D.C rally. (Mahalia Jackson did get to sing the national anthem.) Ms. Height, who did most of her work with the National Council of Negro Women, implied the in saying that "men honestly didn’t see" what they were doing.

I’d also like to think that this is what is happening with same-sex marriage bans - that they will be rejected as more people know gay people. In California, Proposition 8 passed by less of a margin than the earlier Proposition 22, and it is thought that it can be overturned by voters in a few years. This seems to be in contrast to the hateful, apartheid-like bill approved by the Arizona legislature targeting illegal immigrants, even as more and more people accept their existence and agree they should be dealt with fairly.

Beware the Santa

I recently watched the PBS program with Tavis Smiley examining the sermon given by Martin Luther King, Jr., exactly a year before his assassination, in which he denounced the war in Vietnam. Unlike King’s "I have a dream" and "Mountaintop" speeches, this April 4, 1967 sermon, delivered in New York City’s Riverside Church, isn’t talked about much these days. Although it was arguably more powerful, this speech, demanding that justice requires peace, was dangerous.

The speech made King a villain in the white community, including President Johnson, who had been a friend and strong ally. Even the black community was upset with him. Everyone said he should have stuck with civil rights and not get involved with foreign affairs. One King associate interviewed on the program opined that King was killed because of the sermon.

Yet, King is now remembered quite fondly and lauded, almost as a saint and also a martyr. There are schools and streets named for him, and his birthday is a national holiday. How did M.L.K go from being a pariah to being a hero?

We have forgotten - conveniently - that King was a man, a man who was passionate and full of feelings, including anger. We ignore the fact that his soothing message of non-violence was something that he strove for and didn’t preclude strong opinions and emotions. We have sanitized him. As Harvard University black studies professor Cornell West explained to Smiley on the program, there has been a "Santa Clausification" of King. "He now comes with a bag of treats for the kiddies."

Not unlike, it has occurred to me, what has happened with Jesus.

It’s not that Jesus now hands out toys. In fact, to the contrary, he is, to a not insignificant number of people, a stern master who with-holds love and acceptance from those who don’t conform to a certain code of people. The condemnation of gay people in his name is an example of this.

Nevertheless, this wasn’t who Jesus was at all. Jesus was all about love and about reaching out to the other and the enemy. He also wasn’t some pious, prissy follower of rules. No, Jesus was a radical, a hippie (as the patches sewn onto my bibs say), who broke rules, who knocked over the tables of the money-changers in the temple. Furthermore, in being so, he was a man who got furious, had temper tantrums, and who questioned God and wept bitterly.

And he laughed. Taped onto the wall above my desk is a drawing of Jesus laughing, sent to me from a friend who said it was from Playboy magazine. My friend said that when the drawing appeared, Playboy got more hate mail than for any other item it had published.

So I guess Jesus can’t laugh (and be human and sexual). Funny what people want Jesus - and M.L.K - to be.

Keeping on with the talking

Last week, I returned to Casa Colina Hospital to continue the evaluation for a speech device. (See "Talking Needs" post, March 25) An occupational therapist joined the speech therapist and the representative from Dynavox for the session that was nearly two hours. It looks like I’ll be getting the device; I was signing a number of documents at the end that looked plenty official.

I continue to be surprised that Medi-Cal will pay for the device (or nearly all of it - see below), and I all but said so. It feels to me like the women at the hospital have been living in a cave and haven’t been reading and hearing what I keep reading and hearing about the state budget crisis and all the things Medi-Cal isn’t paying for, but, brushing aside my concerns, they insisted I need the device and said that they have a very strong case. Okay. I mentioned that I’m a Regional Center client, and they said this would be a back-up funding source.

Several other things came up during the session:

*I was frustrated, because I was having a harder time using the device than I did the first time around, but the women said I was doing fine and were, in fact, impressed. No doubt I was anxious as well as impatient and hard on myself - nothing new there. I also was a bit tired, which made me more aware that the device will require some heightened effort from me and that there will be times that it may be less effective. In addition, I realized later that I am worried that friends - and perhaps I - will think I will be able to rattle off comments with the device and will be disappointed when I won’t. (Stephen Hawkins pre-sets his comments - I asked.) Yes, I’ll get better with practice, but it is important for all to remember the device will be just another tool - a very powerful, easier-to-use tool, but still a tool.

*Speaking of a powerful tool, I found out something very cool about the device; it is, or can be, essentially a P.C. For a nominal fee, not covered by Medi-Cal, I can use it to write, e-mail, go on-line, read books, etc. It will be like having a laptop attached to my wheelchair. I can see myself doing work or e-mail on my patio or in the park! I can even turn on lights and my T.V with it.

*The therapists continued to be not happy with my wheelchair, so I have an appointment next week for a wheelchair evaluation. They say I will be better able to use the device in another chair, but I am wary. I suspect that what I like about my wheelchair - that I can move around in it (lean over, stretch my legs, raise my butt up, etc.) - is what they don’t like about it, and I don’t want to be pinned down or trapped in a chair. I will see what they have in mind and hear them out, but I’ll also make it clear what I want and don’t want in a wheelchair. While I am very grateful for - and moved by - all the attention and care that I am getting, I do not want to be told what to do or taken over.

One more thing: I was at a potluck on Sunday, and no one sat by me. In addition to wondering if it was because of the messy way I eat and if my attendant should feed me in such a situation, I thought about probably not being able to use the device while I eat.