Better - and older

I got my new chair. At long last, after nearly six months - actually nine months since my doctor signed the wrong prescription for Medi-Cal - it was delivered to my door on Monday morning. Actually, it was unexpected, not what I had planned for the day - it turned out someone didn’t e-mail me during the previous week - and somewhat unreal after waiting so long, but I now have it!

It’s a Quantum Edge (google it) put out by Pride Mobility (how appropriate!), and it’s pretty much a Cadillac among wheelchairs. With a central axle and four small auxiliary wheels, along with some hefty springs, it is extremely agile, with a remarkably smooth ride (more so than with my past chairs) - remarkable because the chair looks topsy-turvy.

For me, this is more than a new wheelchair; it is a new lifestyle. I have to make a number of adjustments in my life. For example, after always having rear-wheel drive, I need to get used to this front wheel - actually central wheel - drive. (When I want the front to go left, the rear goes right - weird!) I need to figure out how to attach a cup holder to the chair. And lights - something the chair company determines to have nothing to do with. Also, a huge issue I have to face is that, in this chair, I can’t access my backpack because of the headrest.

Yes, the chair has a headrest. I’ve never had a wheelchair with a headrest. I never thought I needed one. But, although I insisted that I didn’t want a chair that confined me or pinned me down like I was paralyzed, one of the best things about the chair is that I sit much better, helping my back and my butt, because it is like the seat is molded to my body.

Another great thing about the chair is that I can tilt the entire seat back - far, far back - which is heavenly. When I start to tilt back, I go into another space, and when I’m all the way back, with my knees far above my chest and my feet dangling, I am completely safe and relaxed - more than when I lay down. It is like I am being held. Like I said, it is Heaven. When I go back to the upright position, I really feel refreshed, with a burst of energy. I’ve been wishing for a simple way of resting during the day for years.

I wonder about tilting back in public. Will it frighten people? I’d love to tilt all the way back at concerts. I will probably tilt back part way at lectures and shows and during meeting for worship. (The chair can be driven with the seat tilted back to a certain extent - yes, I’ve been playing with it! - but, so far, I can only control it with the seat tilted back only a few inches.)

I realized the other day that the biggest change is that, in this chair, I am older. With the headrest, the tilting seat, the molded seat, it feels like this is a chair for an old man. There is a part of me that is fighting this, but it’s okay, because this chair will make my life easier. And - guess what - I am getting older.

The other good thing about having this chair is that it means I’ll get my Vmax speech device back. The DynaVox guy is coming to attach it on Monday, when he gets back from Hawaii. Whatever.

Missing an opportunity

Believe me - I wanted to like this movie. I really did.

There was even an article about it on the front page of the Los Angeles Times. On the front page of the main news section - not in the entertainment section. Intouchables, or The Untouchables, a French film being released in the U.S, had been a huge hit - reportedly bigger than Avatar or The Avengers - in France and had won critics’ raves and a slew of awards. This was big news.

What was even bigger news was that the movie is about a severely disabled man. What’s more, it’s a comedy. It’s a comedy about a man, Phillipe, who is immobile and uses a wheelchair and who hires a “bad man,” Dris, an immigrant from Senegal with a rap sheet and whose mother has kicked him out, as an attendant, reasoning that such a fellow won’t pity him. Based on a true story, the film is about how the two became lifelong friends.

I had to see this. This was going to be a realistic, unsentimental and not sappy depiction of life with a disability. At long last! And it was a blockbuster! I rushed out on its first weekend of release to an outrageously expensive matinee showing about an hour away.

As I said, I wanted to like it, and I tried to, but the more I tried to like it, the more I didn’t like it. In short, the movie misses a wonderful opportunity. There is a line between funny and silly, and, while having a subject matter that is rich with unique, provocative, perhaps challenging humor, the movie too often slips over the line into the silly. When it could have been a thought-provoking, stinging “Odd Couple,” it ends up being a slick, screwball “Odd Couple.” Perhaps most upsetting for a French film, it is more of an empty Hollywood summer comedy than a rich, insightful European comedy.

There is a scene in which Dris balks at putting support stockings on Phillipe, saying that a man shouldn’t do such a thing with another man. This is good, meaty - yes, challenging - funny stuff. Too bad we couldn’t see Dris dealing with a catheter! Far more typical, though, was the wince-inducing scene in which the black, poor Dris shows Phillipe’s white, very rich family how to “get down” at a party. (Part of my problem with the film might be that Phillipe, unlike the disabled people I know, is quite wealthy.)

The scene in which Dris, driving Phillipe, careens down the road and Phillips fakes a seizure so that Dris won’t get a ticket when stopped by the police is funny (and not that far-fetched!), but it shouldn’t have been the opening. It was too over-the-top and set a frantic tone for the film. My favorite part of the film, perhaps the saving grace for me, was seeing the real-life Phillipe and Dris during the end credits.

Here are a few better bets for movie-going (although I tend to believe that, in general, going to the movies is a waste between May and September):

“Men in Black 3" - actually quite smart and funny.

“Moonrise Kingdom” - a sweet, if curious, hoot if you can stand director Wes Anderson’s increasingly obsessive hyper-stylization.

“Rock of Ages” - just a lot of summery fun, sweet, sticky, with loads of ear and eye candy, and who knew that REO Speedwagon’s “Can’t Fight This Feeling Anymore” is a coming-out anthem!

Commencing along in Claremont

Following is my column which appeared in Wednesday’s Claremont Courier. I will add that Cameron Munter’s mother has long been active in the Claremont Quaker meeting where I’m a member.


THE MANY REVOLUTIONS THAT START IN CLAREMONT


Something revolutionary happened here last month.

Angela Davis was in Claremont. More specifically, the famous - or infamous - black, radical academic and activist was back in Claremont lecturing. Even more specifically, she was in the honored position of being the main speaker at Pitzer College’s graduation.

When I first heard that Ms. Davis was giving the commencement address at Pitzer, I wasn’t at all surprised. I thought, “Natch!” After all, Pitzer is well-known as the most liberal of the Claremont colleges, at least, and for proudly being pretty out there in terms of activism. But, as I was reminded during the bright Saturday morning ceremony, this was more than Pitzer being Pitzer, with the graduates choosing a provocative speaker; Ms. Davis speaking there was the triumphant closing of a circle and, in a sense, a sweet, victorious homecoming.

I knew that Ms. Davis had taught at the colleges, but I had forgotten just how controversial the appointment, made by the joint black studies department, was. I didn’t know that Ms. Davis accepted the position before it could be withdrawn and that the classes were essentially held in secret. The classes were scheduled on Friday evenings and Saturdays in different locations which the students had to swear not to divulge.

It was 1974, and Ms. Davis had been fired - twice - by U.C.L.A for her controversial views, her Communist sympathies and her activism. She had also been accused of murder, only to have the charge dropped. Ronald Reagan, who was then governor and an U.C regent, vowed that she would never again teach in California.

So Claremont was a refuge for Ms. Davis. Not only that, it rebooted her teaching career. Most ironically, she ended up holding a distinguished professorship for many years at U.C Santa Cruz. And Pitzer College President Laura Trombley said during the graduation that she is welcome to come and teach at the college anytime.

Such making a victory out of a defeat was one of Ms. Davis’ theme during her address. So was freedom and how it demands that we share our knowledge and talents. After asking the graduates to “look at all the men, women and trans-people around you,” she quoted author Toni Morrison, saying, “The function of freedom is to free someone else.”

And aren’t such turn-arounds and reaching out what Claremont is about? Isn’t it this revolutionary activity that puts Claremont on the map?

Angela Davis wasn’t the only one here talking revolution last month. There were many revolutions going on in Claremont, as there are every Spring, with thousands of students graduating from Pitzer and the other colleges.

This is what Claremont is known for, after all. Millions of people have come here over the years to learn and to grow, to find out who they are and perhaps, yes, reboot. Each Spring, we see the results, displayed with all the majestic regalia and pomp and circumstance, with a flurry of commencement exercises, as all these people are sent off into their lives and into the world with their new knowledge and inspiration.

Not bad for Claremont. “Claremont,” as student speaker Benjamin Tumin pronounced with some disdain the next morning at Pomona College’s graduation. To him, if not to all his fellow students, Claremont is, as he said, “nice retirement town.”

But, as was evident at Pomona College’s commencement, the colleges aren’t the only thing in Claremont producing revolutions. Growing up in Claremont can be revolutionary. Proof of this was Cameron Munter, the main speaker and a honorary degree recipient.

Mr. Munter didn’t attend one of the Claremont colleges but was raised here - he gave a Mother’s Day’s shout-out to his mother, Helen-Jeane, who, along with his father, Leonard, was in the audience and still lives in Claremont - and became a foreign diplomat, serving most recently in Pakistan.

Such a job is definitely not for the faint of heart. Much hope and faith is required. Mr. Munter said that a good preparation for this was growing up in Claremont, “a sun-dappled place where peace and all was possible.”

He talked about spending hours wandering around the college campuses as a kid. He also recalled his fellow Claremont High schoolers building a huge statue on top of Bridges Auditorium and adding the name Zappa, as in Frank, to the composers listed on the facade.

There are plenty of these sorts of memories of growing up in Claremont. There are plenty who have these memories. Some are still living here, and many are living far away and all over. They are all changing the world, whether in big ways or in tiny ways, and some of that is because they have these memories of growing up in Claremont.

Put all of these together with all of the students who come from all over to the colleges here and that’s a lot of lives, a lot of revolutions, shaped by Claremont. We see this, as we do every year, with the graduations, both at the colleges last month and with our high school students this month.

Harder and harder

“Illegals are like fleas on a dog... By definition, they are a class a criminals, and you romanticize them. I am voting against the tax increase. Perhaps we can starve them out without benefits.”

This kind of rhetoric regarding illegal immigrants is ugly and disturbing, to say the least, but what is even uglier and more disturbing is how common it now is. It is not only all over talk radio and the internet; it is at least cited in mainstream newspaper columns, and most of the Republican presidential candidates tried to outdo each other in saying how tough they would be on illegal immigrants.

The quote above was in a recent newspaper column - a column in the Los Angeles Times by Hector Tobar. The columnist, who often makes it clear that he takes great pride in his Latino heritage, wrote that this is what a guy named Steve wrote to him after a column Tobar wrote about literacy in Spanish-speaking household.

Never mind that what this guy Steve says is completely illogical - and to a dangerous extent. Not voting for the tax increases on the November ballot is inane. The vast majority of the increased funding won’t go to illegal immigrants. It will go to desperately needed services for us all - schools, healthcare, home-care for the elderly and disabled, police, fire, road maintenance, libraries, parks, etc. As Tobar says, “But starving that old dog called California won’t kill the fleas, Steve. It will kill the dog.” And, yes, there is fraud, ballooning pensions, etc., but this calls for restructuring, not destruction and the slashing of services we all rely on.

What is really disturbing is the dismissing of people not only as “illegals” but as “fleas” that are to be “starved out.” It’s the dismissal of a certain set of people as less than human.

But, as I said, this anti-illegal immigrant talk, as disturbing as it is, isn’t new. What is new and thus even more disturbing is people saying that young adults shouldn’t get help and aren’t being responsible. A while ago, I wrote about a letter in the L.A Times ridiculing the provision in the new healthcare law allowing kids to be covered by their parents’ health insurance until they are 25. Who knew that this is bad, that it keeps children from grows up?

A letter in the Times last week stated, “Unfortunately, our government encourages delayed adulthood by requiring parents’ health insurance policies to cover children until age 26, thus incentivizing the delay.

The people who write these letters can’t stand other people having it easier than - or even as easy as - they did. I guess I’m not surprised that a recent study by the Pew Research Center found that 54% of Republicans reject the idea that the government has a “responsibility to take care of people who can’t take care of themselves.” But I’m still disturbed.

Looking back, again

Two weeks ago, I shared a piece here that I wrote about ten years ago about coming out as a disabled, gay man. Here is another look back - my latest column in the Claremont Courier, recalling the Los Angeles riots twenty years ago.

THE FIRES FAR AND NOT SO FAR AWAY

He told me to go to Hell. Actually, what he told me to do is not something I can say here. In any case, it certainly was not what I was expecting.

I had called my friend, because I was concerned, because I wanted him to know I was thinking of him. I had called him to find out if he was okay. After all, the city had gone into chaos, with people setting fires and looting and beating and shooting each other, and my friend was living at the heart of it. I wanted to know that he was safe.

I had gone several times to where my friend was living was his mother in what was then called South-Central Los Angeles. His mother, who spoke only Spanish, was proud of the way she kept her house and had a spectacular garden. The home was essentially an oasis in an area that looked and felt dangerous, an area where, to be honest, I wouldn’t have gone if my friend wasn’t staying there.

My friend knew this. He had spent a lot of time with me in Claremont and knew that where I lived was much different. He knew that what I was used to was much different.

So when I called him two or three days after the L.A riots began with the inexplicable not-guilty verdict in the Rodney King beating trial on April 29, 1992, my friend more or less slapped me over the phone line and told me to snap out of it. He told me he didn’t need my pity. He told me I had no business calling him, that I had no idea of what was going on there, that I was putting my safe comfort in Claremont in his face.

I had not thought of this phone call in years, but it came back to me, painfully, when I read the series of articles in the Los Angeles Times marking the twenty-year anniversary of the riots. It could well be that there were other things going on with my friend that brought out this anger (when I saw him one or two times after this, there was a marked strain in our relationship), but, as was pointed out in many of the Times articles, the King verdicts and the subsequent civil unrest put the differences between people and between neighborhoods or areas into the sharpest of contrasts.

These differences and contrasts were all too evident. Before the riots, I thought the neighborhood where my friend was living was dangerous enough. When I saw the television coverage of the riots, with the fires burning out of control, with people running through the streets and breaking windows and stealing anything they could grab in stores, with the National Guard rolling in and patrolling the dead streets at night with guns, it was like watching something happening faraway, most likely in another country. With all this violence unfolding, with civil society coming undone before my eyes, it was like watching another world from the comfort of my nice, safe living room.

Except it wasn’t. Not really.

I don’t remember if it was before or after I called my friend, but it was seeing a play at Pomona College that made me see that what was going on in L.A wasn’t so far off. For one thing, my parents and I had tickets for a play at the Mark Taper Forum, but the performance was cancelled - due to “mayhem.”

So my mother and I decided to check out the show here. I also don’t recall - this was, after all and as the Times reminded me with its series, twenty years ago - if it was a department production. It may have been a student production, because the play was written by a student.

The student was an African American young woman, and her play was about growing up in poverty. I remember it being quite powerful and emotional, and, although I don’t remember it being a sad play, I remember that suddenly I was about to cry. I suddenly saw how people could be so unhappy and so angry that they not only lash out but also destroy all that they have. I suddenly saw that this was indeed what was going on in L.A, and this made it not so far away.

As the Times stories made clear, things are now better, if not much better, overall, in Los Angeles. Yes, there is high unemployment and other economic hardships, especially among people of color, but the crucial relationship between the police and the community is significantly improved, and the vast majority of people said that they get along and that it is unlikely that such civil unrest will happen again.

I got another reminder not too long afterwards, when the Northridge earthquake struck, damaging the 10 freeway near Santa Monica and causing its (surprisingly briefer than expected) closure. Suddenly, I wasn’t sure about getting to various activities. Summer was coming - could I get to my favorite beach?

Then, there was the Landrum shooting, involving the Claremont Police Department, several years later, and, now, we are being challenged by the Occupy Claremont activists to look at the homeless in Claremont. No, we here in our small town weren’t and aren’t so faraway.

Lost in a bad budget

“‘All we’ve been told is that it’s really bad,’ said Vanessa Cajina, a lobbyist at the Western Center on Law and Poverty, which advocates for the poor. ‘Essentially anything in the safety net is up for grabs now.’”

Is this why, after over five months, I still haven’t gotten my new wheelchair? Is this why, after my wheelchair broke down on January 6 while I was out, I am still using a less-than-ideal loaned chair (but thank God I have it!) and still not able to use my Vmax speech device (which I don’t have the mount for attaching to this chair).

Almost every day, it seems, I read newspaper articles about the horrendous shape the California state budget is, and I can’t help but think about how much I rely on it, not only for my wheelchair and health insurance but also, arguably even more importantly, for paying my attendants, allowing me to live independently. The quote above is from an article that appeared in Friday’s Los Angeles Times in anticipation of Governor Jerry Brown unveiling his revised proposed budget. When the critical “May revise” came on Monday, with Brown revealing the tax revenue from April and his proposal for what to do with it, it was every bit as bad as, if not worse than, what was feared. Instead of a $9.2 billion - with a b - deficit, as was estimated in January, the deficit is now nearly double that, at about $16 billion.

There are many explanations and arguments. People aren’t earning and then buying as much, so tax revenue is down. More people than thought are using state services and resources. Democratic legislators want to raise taxes, but Republican legislators are determined to block such attempts. The governor is desperately hoping that voters will approve temporary tax hikes that he has put on the November ballot.

All this doesn’t make the news any easier for me - not to mention I can barely imagine the sums involved. It is no fun always wondering if the cuts that have to be made, even if taxes can be raised, will mean that I can’t get the equipment and services I need to live my life to its fullest and be productive.

It’s also no fun when, as happened last weekend, I saw a friend who uses a power wheelchair using a pick-up truck to get around. I asked another friend how this is done and was told that my friend is taken out of his chair and put into the truck cab and then a board is used to get the chair into the truck bed.

“Why doesn’t he have a van? He should have a van,” I said. Yes, I was mad but not at my friend. I was, and am, angry at our rich society that makes it so hard to get the help that they so clearly need.

Meanwhile, I got a notice in the mail yesterday saying that my Medi-Cal is being terminated, because I didn’t return a form which I didn’t get in the mail. The notice was mailed the day after I mailed back the form I got after discovering the initial mailing got lost.

No, it’s definitely no fun.

Coming out of the past

Back in the Fall, I wrote about going to a P-FLAG meeting in L.A and how it made me miss the P-FLAG chapter that used to be in Claremont when I came out. It also made me remember a piece I wrote that was published in the chapter’s newsletter, and I thought about sharing it here but couldn’t find it. Then - as always happens, right? - when I was looking for another paper a couple weeks ago, I came across the newsletter. You can read the piece as it was published in the summer of 2001 below.

A short note: At the time, I was using a small voice synthesizer called a LightWriter, which was attached to my chair and consisted of a keyboard and a one-line screen. Unlike the device I now have, it required that I actually type, which ultimately proved to be too laborious, tedious and tiring.


FINDING MY WAY IN NO-MAN’S LAND: ON BEING GAY AND DISABLED

When I attended my first P-FLAG meeting two and a half years ago, I was terrified. In fact, I went only on the condition that my friends Jim and Alan would be attending. I needed them there for support, if not to hold my hand.

Part of my concern had to do with how folks would deal with my impaired speech, even with my use of a speech synthesizer. I face this whenever I encounter people who don’t know me or aren’t used to conversing with me. A bigger fear was in saying, “Hi, I’m John, and I’m gay” in a public setting. I had come out a month or two earlier, and I was now announcing it for all to hear. This is a huge step and scary for many P-FLAG newcomers, but it was scarier for me, because I was afraid people would say, “Yeah, right!”

In addition to having impaired speech, I use a wheelchair. Having Cerebral Palsy, I am disabled - “severely disabled” is how it has always been put - and have been all my life. Although I had had vague sexual feelings and yearnings, I never saw myself in a sexual relationship, and I was never treated as if I would (or could) be, presumably because of my disability. Now, suddenly, at the tender age of 39, I found myself in a sexual relationship, and, in coming out, I wasn’t only saying that I’m a gay man; I was proclaiming myself to be a sexual being.

Although it was and is a great joy to say this, I feel that I was and am taking a real risk when doing so, not only in the straight world but also, and perhaps even more so, in the gay community. I have always loved dancing, but I have always been wary of dancing in bars or clubs, for fear I might freak people out (“Oh, he’s having a seizure!”).

Likewise, I didn’t and still don’t go to gay bars and clubs. I didn’t and don’t want to deal with the “What are you doing here?” stares and the “You think I’d want you?” laughter. (I’ve realized that this is why I didn’t come out five and even eighteen years ago.)

Real or not, these were the messages I got. Shortly after attending my first P-FLAG meeting, I began attending a local gay men’s conversational group. Although I was welcomed - it was an open group, after all, and there were rules about everyone being allowed to speak and not putting anyone down - it was clear to me that I was not wanted there. I went nearly every Thursday evening for the better part of a year, but it was a chore, and I only realized more and more that I didn’t look forward to going. I once had my former boyfriend attend, and he spoke quite movingly and in some detail about being with me, but it didn’t help. I still wasn’t one of those sexually active gay men, that is, if I was even gay. “What are you doing here?” was still the message I got.

In the past year and a half, as I have continued to attend Claremont P-FLAG meetings, if on a sporadic basis, I have become involved with several other groups with much more success. Two of these are the Moon Circle, a L.A area of the Radical Faeries, and, just recently, the California Men’s Gathering. Although my first meetings were still terrifying, I have found the mostly gay and bisexual men in these groups to be, for the most part, quite friendly and warmly accepting. There are still awkward pauses and side glances, and I do wish that I didn’t have to travel so far to participate in the many and varied activities, but I deeply appreciate these groups’ commitment to openness and diversity.

This isn’t to say that all is nice and easy. There have been plenty of times when I’ve had to get on these guys’ cases, rattle their cages, to remind them that I’m there and to accommodate and assist me. However, I sense that they mean well and that, for the most part, they are trying, and there is always the guy like the guy at a recent clothing-optional pool party who, without my saying anything, offered to and was not afraid to take me into the pool.

And there are still times when all my cage rattling doesn’t help. At the California Men’s Gathering over Memorial Day weekend, I read a poem of mine at the talent show. The poem is about my body, about how my body is sexual and desirable despite being crippled and contorted, and the reading was a dramatic one. A friend read it along with me, and, for the first time, I read it as I meant it to be read when I wrote it a few years ago - in the nude. For me, and most of the 250 or so men in the hall, it was a profoundly powerful experience and one of celebration.

I say most, because, as my attendant told me later, a man came up to him in the restroom afterwards and said that my reading was “the saddest part of the show.”

“Man,” my attendant said, looking at the guy as he left the restroom, “you’re missing the point. You just don’t get it.”

He doesn’t. And it’s his loss.