A few weeks ago, the big news was that Jerry Lewis was ousted as the spokesman and public face of the Muscular Dystrophy Association. He will no longer be doing his famous - or infamous - stint as host of the M.D.A’s marathon Labor Day telethon.
In what I read in the Los Angeles Times, there were plenty of people who were “outraged” that the “iconic” comedian was “unceremoniously dumped” from this “legendary” role. There was mention of how important it was to Mr. Lewis to find a cure for muscular dystrophy and to help to do so, including by annually hosting a live television broadcast for 24 hours straight. There was comment on how the comic is beloved despite having made impolitic remarks about women and gay people.
But there was nothing, other than a brief mention in a commentary, about Jerry’s Kids. There was nothing about how Jerry’s Kids have always considered Jerry Lewis and the telethon - or his telethon? - to be infamous, to say the least.
Jerry’s Kids are adults living with Muscular Dystrophy, spearheaded by Mike Ervin and others, who are active and productive and who have strenuously objected to the way Mr. Lewis has always, often in tears on the telethon, portrayed those with M.D as helpless, all-but-dead victims to be pitied. I remember at one point the Kids got into a public argument with Mr. Lewis, in which Mr. Lewis, in a television interview, not only adamantly refused to say he was doing anything wrong but also chastised the Kids for causing a ruckus.
There was nothing about this in all the news I saw. And I think this is more than another instance of the mainstream media ignoring the disabled and what matters to them.
In fact, Jerry Lewis’ ouster as the M.D.A spokesman can be seen as a victory for Jerry’s Kids and at least in part spurred on by them. The M.D.A surely recognizes that Mr. Lewis’ pity model is badly outdated (as is the telethon, which has been drastically shortened to 3 or 4 hours). Give the Kids some mention, if not some credit.
Friday, August 19, 2011
Friday, August 5, 2011
Good-bye, Mr. Weinberger
This was my column in the Claremont Courier a couple weeks ago.
AN EDUCATION WITH MARTIN WEINBERGER
“Do you need to wear shorts for therapy?”
Mmmmmm. Shorts for therapy. It was the perfect excuse for a guy fresh out of high school. Yes, I need to wear shorts to keep my legs in shape. Or how about this? If I don’t wear shorts, my health will be endangered.
Alas, I couldn’t use it. It was the Friday of my first week of being a summer intern at the Courier, and Martin Weinberger, my first boss, had gotten me. I went home, red-faced - why didn’t he tell me on Monday that short pants weren’t allowed at the office? - and made sure I wore long pants when it was time to go to work, no matter how matter how blazing hot it got.
Later, when I began writing my column at home and before I could e-mail it in (hopefully not the same as phoning it in), I would sort of panic when I showed up at the door to drop it off in my overalls, especially if I wasn’t wearing a shirt.
I thought of all this in the days after I heard that Martin had died a couple weeks ago during a hot spell. I also thought that it was most appropriate that this passing took place - almost like with Thomas Jefferson and John Adams - only a few minutes after the Fourth of July.
For Martin was always, always a teacher - sometimes quite a stern one - and his principle, most heartfelt subject, much more so than office attire, was a free, accurate press and its critical role in there being citizens with the right, if not the obligation, to be informed and active. I wasn’t surprised at all to read in his obituary that he wrote news stories as a child in school. And longtime readers surely remember him frequently opining in these pages on the importance of voting, lamenting and even chiding those who didn’t.
The summer of no shorts, in 1980, was the first of two or three, and it was when the Courier office was still on Harvard Avenue, with Martin perched at his desk on the upstairs balcony from where he could see all (including, no doubt, my bare legs...). It was when Martin’s bold, innovative use of super-sized, close-up photographs in the paper, with which he told me he wanted “to bring Claremonters into each other’s living rooms and kitchens” (remember the “Mug Shot” features?), were still causing a bit of rumbling and when Thelma O’Brien and Hope Weingrow were furiously banging out their stuff on manual typewriters, gunning, with cheers from their ardent fans, for the Pulitzers. It was also when I noticed that I was one of the few guys working there and first heard of what was affectionately referred to around town as “Martin’s harem.”
My job - or assignment, since I wasn’t getting paid then - from 8 to noon weekdays was to rewrite the press releases that kept piling up, taking out all the hyped-up language, giving “just the facts” but in a dynamic way, as Martin insisted. These came out as blurbs in the “Our Town” section. I also got to do some wedding and engagement announcements and even a few back-page items. None of these had a byline, but when the Courier came to my house, I very proudly circled every piece I had written in bright red.
My first byline came that first summer when Martin bought tickets to two Shakespeare plays (Romeo and Juliet and Love’s Labors Lost) at the Old Globe Theater complex in San Diego’s Balboa Park for me review. I was absolutely thrilled, having let him know I wanted to write reviews. He said this was fine but made sure I understood that what I was writing was not news. It was a review, an opinion - not news.
Martin loved - no, he adored - doing this kind of explaining. He really was a born teacher. And more often than not, as in his “My Side of the Line” column, there was a story or two, usually humorous, that went along with the explaining. I soon saw that these stories were quite familiar; as beloved as they were, there was always some eye-rolling from a staff member or two.
As with the bright, bold layout of the Courier, Martin liked trying new things, and I was certainly a new thing for him. Here I was - a kid in a wheelchair with speech he couldn’t understand. He clearly enjoyed the challenge. Even when he got stern with me, he would grin and chuckle. We were off on a grand, wild adventure together. (I just now realize he had me re-writing all those press releases so that I could do some straight journalism without having to interview people.)
After a few summers of doing internships in Riverside and then graduating from U.C Riverside in 1985 with a B.A in English, I was looked around for a job I could do and wrote to Martin, asking about doing movie reviews. He said that he already had a movie reviewer but suggested I write a regular column on goings-on in Claremont and how I saw them. This would be sort of like reviewing life, Claremont life - cool! At $10 a column, I was off and running.
We agreed that I would not mention my disability, except when it had something to do with what I was writing about (sidewalks and curb cuts, etc.). I loved not being a disabled columnist and that Martin encouraged this. (I’ve had plenty of other forums in which to write as a person with a disability.)
We did have our disagreements, though, especially in the first ten years or so, when he kept a particularly sharp eye on my column and although he would occasionally raise my pay in $5 increments. He got nervous when I got partisian (even though he agreed with me), didn’t like it when I didn’t mention Claremont in a column (“That could be in the Washington Post.”) and really had a problem when I wrote about an African-American professor publicly accusing (in an Op-Ed published in the Los Angeles Times) Claremont Graduate University of racism after being fired. He also told me not to include my poetry in my columns.
Most of these discussions, if that’s what they were, didn’t take place in person. (He had a fondness for typing out notes on his “letterhead” letterhead.) Once I started doing the column, I really didn’t see Martin much. This was no doubt for the best, since I had started wearing overalls - including, yes, short ones - and doing all kinds of things with my hair.
Much later, I would see him in passing slowly walking his dog Rosie outside the office on College Avenue. But I prefer to recall one of the other last times I saw him.
It was, in fact, in my final year at U.C.R. I was going down the hallway in the humanities building when I passed an open classroom door - and did a double take. There he was - Martin, standing at the head of the class.
Teaching. As always.
AN EDUCATION WITH MARTIN WEINBERGER
“Do you need to wear shorts for therapy?”
Mmmmmm. Shorts for therapy. It was the perfect excuse for a guy fresh out of high school. Yes, I need to wear shorts to keep my legs in shape. Or how about this? If I don’t wear shorts, my health will be endangered.
Alas, I couldn’t use it. It was the Friday of my first week of being a summer intern at the Courier, and Martin Weinberger, my first boss, had gotten me. I went home, red-faced - why didn’t he tell me on Monday that short pants weren’t allowed at the office? - and made sure I wore long pants when it was time to go to work, no matter how matter how blazing hot it got.
Later, when I began writing my column at home and before I could e-mail it in (hopefully not the same as phoning it in), I would sort of panic when I showed up at the door to drop it off in my overalls, especially if I wasn’t wearing a shirt.
I thought of all this in the days after I heard that Martin had died a couple weeks ago during a hot spell. I also thought that it was most appropriate that this passing took place - almost like with Thomas Jefferson and John Adams - only a few minutes after the Fourth of July.
For Martin was always, always a teacher - sometimes quite a stern one - and his principle, most heartfelt subject, much more so than office attire, was a free, accurate press and its critical role in there being citizens with the right, if not the obligation, to be informed and active. I wasn’t surprised at all to read in his obituary that he wrote news stories as a child in school. And longtime readers surely remember him frequently opining in these pages on the importance of voting, lamenting and even chiding those who didn’t.
The summer of no shorts, in 1980, was the first of two or three, and it was when the Courier office was still on Harvard Avenue, with Martin perched at his desk on the upstairs balcony from where he could see all (including, no doubt, my bare legs...). It was when Martin’s bold, innovative use of super-sized, close-up photographs in the paper, with which he told me he wanted “to bring Claremonters into each other’s living rooms and kitchens” (remember the “Mug Shot” features?), were still causing a bit of rumbling and when Thelma O’Brien and Hope Weingrow were furiously banging out their stuff on manual typewriters, gunning, with cheers from their ardent fans, for the Pulitzers. It was also when I noticed that I was one of the few guys working there and first heard of what was affectionately referred to around town as “Martin’s harem.”
My job - or assignment, since I wasn’t getting paid then - from 8 to noon weekdays was to rewrite the press releases that kept piling up, taking out all the hyped-up language, giving “just the facts” but in a dynamic way, as Martin insisted. These came out as blurbs in the “Our Town” section. I also got to do some wedding and engagement announcements and even a few back-page items. None of these had a byline, but when the Courier came to my house, I very proudly circled every piece I had written in bright red.
My first byline came that first summer when Martin bought tickets to two Shakespeare plays (Romeo and Juliet and Love’s Labors Lost) at the Old Globe Theater complex in San Diego’s Balboa Park for me review. I was absolutely thrilled, having let him know I wanted to write reviews. He said this was fine but made sure I understood that what I was writing was not news. It was a review, an opinion - not news.
Martin loved - no, he adored - doing this kind of explaining. He really was a born teacher. And more often than not, as in his “My Side of the Line” column, there was a story or two, usually humorous, that went along with the explaining. I soon saw that these stories were quite familiar; as beloved as they were, there was always some eye-rolling from a staff member or two.
As with the bright, bold layout of the Courier, Martin liked trying new things, and I was certainly a new thing for him. Here I was - a kid in a wheelchair with speech he couldn’t understand. He clearly enjoyed the challenge. Even when he got stern with me, he would grin and chuckle. We were off on a grand, wild adventure together. (I just now realize he had me re-writing all those press releases so that I could do some straight journalism without having to interview people.)
After a few summers of doing internships in Riverside and then graduating from U.C Riverside in 1985 with a B.A in English, I was looked around for a job I could do and wrote to Martin, asking about doing movie reviews. He said that he already had a movie reviewer but suggested I write a regular column on goings-on in Claremont and how I saw them. This would be sort of like reviewing life, Claremont life - cool! At $10 a column, I was off and running.
We agreed that I would not mention my disability, except when it had something to do with what I was writing about (sidewalks and curb cuts, etc.). I loved not being a disabled columnist and that Martin encouraged this. (I’ve had plenty of other forums in which to write as a person with a disability.)
We did have our disagreements, though, especially in the first ten years or so, when he kept a particularly sharp eye on my column and although he would occasionally raise my pay in $5 increments. He got nervous when I got partisian (even though he agreed with me), didn’t like it when I didn’t mention Claremont in a column (“That could be in the Washington Post.”) and really had a problem when I wrote about an African-American professor publicly accusing (in an Op-Ed published in the Los Angeles Times) Claremont Graduate University of racism after being fired. He also told me not to include my poetry in my columns.
Most of these discussions, if that’s what they were, didn’t take place in person. (He had a fondness for typing out notes on his “letterhead” letterhead.) Once I started doing the column, I really didn’t see Martin much. This was no doubt for the best, since I had started wearing overalls - including, yes, short ones - and doing all kinds of things with my hair.
Much later, I would see him in passing slowly walking his dog Rosie outside the office on College Avenue. But I prefer to recall one of the other last times I saw him.
It was, in fact, in my final year at U.C.R. I was going down the hallway in the humanities building when I passed an open classroom door - and did a double take. There he was - Martin, standing at the head of the class.
Teaching. As always.
Friday, July 22, 2011
Playing with disability
“Sadly, the cost associated with taking the medication to control that illness was that he completely lost what he called ‘the pep.’ The pep stemmed from that manic energy that would compel him to just burst out into song and write and create music. Once he started taking the medications, sadly that ended. He was no longer Wild Man Fischer... He became Larry Fischer.”
Yes, it was sad, but for who?
It is bad - and sad - enough - or perhaps I just find it irritating enough - when disabled characters, especially those with psychological illnesses, are portrayed as oh-so cool, even hip. I’m talking about movies like Benny and Joon and What’s Eating Gilbert Grape, in which the eternally cool Johnny Depp puts up with being responsible for his schizophrenic brother played by a young, hot Leonardo diCaprio. There’s also Girl, Interupted, in which the hip, pre-shoplifting Winnona Ryder plays a young woman chills out in a mental institution.
I can list other films, but I think you get the point: Being crazy, being a freak can be cool and entertaining, even fun.
However, these are just movies. What about the case of Larry “Wild Man” Fischer, who died last month? According to the large obituary in the Los Angeles Times, Fischer was a mentally ill man who hung out on the streets of Hollywood ranting like many others. But his rants were particularly creative and entertaining and caught the ear of Frank Zappa and other who got him gigs on recordings and shows.
Fischer got to be a star, a cool, hip star of sorts, but this stardom depended on him for being sick, on him being a freak. As conveyed in the quote above by Jeremy Lubin, a documentary filmmaker, when he sought to get more sane and “normal,” he lost the ability to be entertaining. He lost “the pep” and was no longer a star.
Again, who was this sad for? Fischer, who was relieved of the demons in his head, or those entertained by his creative and cool rants?
I have also been thinking of Jared Lochner, charged in the mass shooting in Tuscon in January, who is being held in a mental ward, having been deemed unable to stand trial. That has been a legal fight over whether he can be forced to take drugs that will enable him to stand trial. A court has ruled he can’t be forced to take drugs for this purpose, but I just read this morning that he is apparently being drugged anyway.
This literally doesn’t make sense to me. I don’t know who’s crazier - Lochner, or those who want to dope him up so he can be tried and convicted.
Yes, it was sad, but for who?
It is bad - and sad - enough - or perhaps I just find it irritating enough - when disabled characters, especially those with psychological illnesses, are portrayed as oh-so cool, even hip. I’m talking about movies like Benny and Joon and What’s Eating Gilbert Grape, in which the eternally cool Johnny Depp puts up with being responsible for his schizophrenic brother played by a young, hot Leonardo diCaprio. There’s also Girl, Interupted, in which the hip, pre-shoplifting Winnona Ryder plays a young woman chills out in a mental institution.
I can list other films, but I think you get the point: Being crazy, being a freak can be cool and entertaining, even fun.
However, these are just movies. What about the case of Larry “Wild Man” Fischer, who died last month? According to the large obituary in the Los Angeles Times, Fischer was a mentally ill man who hung out on the streets of Hollywood ranting like many others. But his rants were particularly creative and entertaining and caught the ear of Frank Zappa and other who got him gigs on recordings and shows.
Fischer got to be a star, a cool, hip star of sorts, but this stardom depended on him for being sick, on him being a freak. As conveyed in the quote above by Jeremy Lubin, a documentary filmmaker, when he sought to get more sane and “normal,” he lost the ability to be entertaining. He lost “the pep” and was no longer a star.
Again, who was this sad for? Fischer, who was relieved of the demons in his head, or those entertained by his creative and cool rants?
I have also been thinking of Jared Lochner, charged in the mass shooting in Tuscon in January, who is being held in a mental ward, having been deemed unable to stand trial. That has been a legal fight over whether he can be forced to take drugs that will enable him to stand trial. A court has ruled he can’t be forced to take drugs for this purpose, but I just read this morning that he is apparently being drugged anyway.
This literally doesn’t make sense to me. I don’t know who’s crazier - Lochner, or those who want to dope him up so he can be tried and convicted.
Friday, July 8, 2011
Red, white and "shoot!"
I think I mentioned in a previous post that I hate the Fourth of July and that the primary reason for this - on top of the All-American-America-is-Always-Right jingo-ism - is that I have a very difficult time, being startled, with the noise from the fireworks. This year was particularly tough, with there being more illegal fireworks than I remember in a good many years. They started going off around here more than a week before the 4th and kept going until after midnight on Monday. I even heard a couple the next evening.
“Don’t they know it’s over?” I kept saying to my attendant when she came to put me to bed on the 4th.
Who were they? I wondered, figuring they were more than the usual bad boys being bad. And why were they shooting off so much? A few thoughts:
A lot of people are angry, what with all the unemployment, foreclosures, high prices, etc., and this was a good way to let off steam. Who cares if it’s illegal? The government and laws are stupid, and, Hell, it’s the 4th, and everyone’s doing it - and should!
It has been ten years since September 11, and, by God, we’re still standing and still strong - and more of a big deal should be made about it!
Then there’s the killing of Osama Bin Laden - certainly something worth celebrating with pyrotechnics, even if it’s illegal. But this presents a quandry, because it was done under President Obama, which no doubt drives some people nuts. Which leads back to pissed-off folks blowing of steam.
Or maybe there were just more bad boys out there.
“Don’t they know it’s over?” I kept saying to my attendant when she came to put me to bed on the 4th.
Who were they? I wondered, figuring they were more than the usual bad boys being bad. And why were they shooting off so much? A few thoughts:
A lot of people are angry, what with all the unemployment, foreclosures, high prices, etc., and this was a good way to let off steam. Who cares if it’s illegal? The government and laws are stupid, and, Hell, it’s the 4th, and everyone’s doing it - and should!
It has been ten years since September 11, and, by God, we’re still standing and still strong - and more of a big deal should be made about it!
Then there’s the killing of Osama Bin Laden - certainly something worth celebrating with pyrotechnics, even if it’s illegal. But this presents a quandry, because it was done under President Obama, which no doubt drives some people nuts. Which leads back to pissed-off folks blowing of steam.
Or maybe there were just more bad boys out there.
Friday, June 24, 2011
Unhealthy play
I’m not a sports fan. Never have been. Frankly, they’re boring. I might watch some figure skating or gymnastics (or hot boys swimming in the Olympics!), but I far rather see a play or a movie or a concert. I could be cute and say that this is, of course, because I’m gay, or I could be profound and say that watching sports is silly when there is so much more important stuff going on. But the simple truth is that I just find sports boring.
At least until now. I think I have another reason for not liking sports. There’s something sick about sports and the way people like them.
Last week, after the Canucks lost the deciding Game 7 of the Stanley Cup hockey finals, there was a riot, causing much damage in the handsome city center of Vancouver, Canada. It is a bit like this happening in San Francisco (from what little I remember of a summer spent in the Vancouver area when I was a child, the city is quite elegant and sophisticated, not to mention remarkably green and lush).
It is really tragic that this destruction came out of a game and that, as an article in the Los Angeles Times pointed out, this isn’t unusual. What was unusual, as also noted in the article and bizarrely so, I think, was that this riot came after a hometown team lost. It was just a year ago when, as I noted in a post here, downturn Los Angeles was smashed up after the L.A Lakers won the basketball finals, which, weirdly enough, is far more typical.
Why riot when your team wins? Another fact that the Times article brought up is that, in these sports riots, the fans aren’t the ones throwing the bottles and lighting the fires. The actual rioting is usually done by anarchists and other rabble-rousers, along with those revved up after drinking, taking advantage of there being a large, boisterous crowd in which there is anonymity. But I don’t think this lets sports off the hook; these still are unique and still are sports riots.
About a week earlier, the L.A Times sports section had a big pictorial homage, including on much of its front page, to those who have played or competed and were victorious while sick or injured. Among those honored under the headline “Hurts so good” were football players who had played with the flu and runners who ran with sprained joints.
I can understand someone being hailed for saving a life or accomplishing something that improves society while ill or hurt. But for playing - even, yes, winning - a game? Shouldn’t they not be playing if they have a fever or a torn ligament? Shouldn’t they be taking care of themselves or getting care?
Instead, they are seen as heroes. Not only does this put things dangerously out of perspective - after all, kids have died after playing football in the hot sun or getting hit in the head - it reflects our society’s warped, nutty - yes, sick - view of the disabled as people to be pitied or admired or often pitied and admired at the same time.
Hey, it’s only a game.
Or, with it causing riots and such (heat-related deaths, brain injuries, etc.), is it?
At least until now. I think I have another reason for not liking sports. There’s something sick about sports and the way people like them.
Last week, after the Canucks lost the deciding Game 7 of the Stanley Cup hockey finals, there was a riot, causing much damage in the handsome city center of Vancouver, Canada. It is a bit like this happening in San Francisco (from what little I remember of a summer spent in the Vancouver area when I was a child, the city is quite elegant and sophisticated, not to mention remarkably green and lush).
It is really tragic that this destruction came out of a game and that, as an article in the Los Angeles Times pointed out, this isn’t unusual. What was unusual, as also noted in the article and bizarrely so, I think, was that this riot came after a hometown team lost. It was just a year ago when, as I noted in a post here, downturn Los Angeles was smashed up after the L.A Lakers won the basketball finals, which, weirdly enough, is far more typical.
Why riot when your team wins? Another fact that the Times article brought up is that, in these sports riots, the fans aren’t the ones throwing the bottles and lighting the fires. The actual rioting is usually done by anarchists and other rabble-rousers, along with those revved up after drinking, taking advantage of there being a large, boisterous crowd in which there is anonymity. But I don’t think this lets sports off the hook; these still are unique and still are sports riots.
About a week earlier, the L.A Times sports section had a big pictorial homage, including on much of its front page, to those who have played or competed and were victorious while sick or injured. Among those honored under the headline “Hurts so good” were football players who had played with the flu and runners who ran with sprained joints.
I can understand someone being hailed for saving a life or accomplishing something that improves society while ill or hurt. But for playing - even, yes, winning - a game? Shouldn’t they not be playing if they have a fever or a torn ligament? Shouldn’t they be taking care of themselves or getting care?
Instead, they are seen as heroes. Not only does this put things dangerously out of perspective - after all, kids have died after playing football in the hot sun or getting hit in the head - it reflects our society’s warped, nutty - yes, sick - view of the disabled as people to be pitied or admired or often pitied and admired at the same time.
Hey, it’s only a game.
Or, with it causing riots and such (heat-related deaths, brain injuries, etc.), is it?
Thursday, June 16, 2011
The year of (V)maxing out
I recently improved my experience with my Vmax, the voice synthesizer/computer attached to my wheelchair that I operate via a camera tracking a silver dot on my glasses and which I’ve now had for a year, by at least 100%. In late April, I was able to get an unit, called a WPAC, which enables the Vmax to run off my wheelchair battery.
I immediately loved this little thing. As far as I was concerned, it was the greatest thing since sliced bread. I was able to leave the Vmax on, ready to use, all day. I didn’t have to always worry about its battery running out and about rationing it.
Then, one morning earlier this month when my attendant went to plug the unit into my chair, the plug wasn’t there. I had no idea how this happened - all I could think was that it came unplugged or wasn’t plugged in and got caught under my wheel when I was out - and I was devastated. I was crushed, ruined.
There was no way I could come up with another $400 for a new WPAC. And it didn’t help when my attendant called the company, DynaVox, several times, and they were less and less sympathetic, saying the warranty had expired, etc. I was stunned - yes, naively - that a company that had helped me so much (with the Vmax and the WPAC) could play such hardball (it is a business, after all....) and thinking of other options (hot-wiring....?) until, after more calls and waiting on hold, a senior manager agreed to send me a new cable in exchange for the broken one. (And when I get it, I’ll have it attached more to my chair so that it won’t dangle down so far when unplugged - lesson learned.)
So I’m happy again.
Happy, like I am with the Vmax - in general. I say “in general,” because, although it’s a fantastic help, I have learned a couple other hard lessons in this past year:
*There are definitely times and places where using the Vmax is very effective and other times and places where it really isn’t. It does help when, at least initially, people can see the screen and what I’m doing, but, in very general terms, the more comfortable (or sometimes even just familiar) people are with my speech, the less patient they are with my using the Vmax.
*Not unrelated to this and an even more difficult lesson is that, when I use the Vmax, people still have to stop and take time to listen to what I say. The difference with the Vmax is that - and this is a choice for those who know me - people don’t have to make the effort to try to understand my speech, but the hard fact is that, unless I pre-program it, I can’t casually toss off a comment.
I have learned other things - like typing in an initial comment before I approach someone and it sometimes being better (and okay) to just use the touch screen - but, all in all, the Vmax is a fantastic, life-improving device, even when I just use it to listen to my iTunes when I go out. At a recent gathering, I was able to talk to many more people or people I couldn’t talk to before. For me, this is what it’s all about.
At the same gathering, I also discovered that reciting limericks, especially naughty ones, on the monotonic Vmax is quite amusing. (Perhaps I’ll have another video out on YouTube...)
I immediately loved this little thing. As far as I was concerned, it was the greatest thing since sliced bread. I was able to leave the Vmax on, ready to use, all day. I didn’t have to always worry about its battery running out and about rationing it.
Then, one morning earlier this month when my attendant went to plug the unit into my chair, the plug wasn’t there. I had no idea how this happened - all I could think was that it came unplugged or wasn’t plugged in and got caught under my wheel when I was out - and I was devastated. I was crushed, ruined.
There was no way I could come up with another $400 for a new WPAC. And it didn’t help when my attendant called the company, DynaVox, several times, and they were less and less sympathetic, saying the warranty had expired, etc. I was stunned - yes, naively - that a company that had helped me so much (with the Vmax and the WPAC) could play such hardball (it is a business, after all....) and thinking of other options (hot-wiring....?) until, after more calls and waiting on hold, a senior manager agreed to send me a new cable in exchange for the broken one. (And when I get it, I’ll have it attached more to my chair so that it won’t dangle down so far when unplugged - lesson learned.)
So I’m happy again.
Happy, like I am with the Vmax - in general. I say “in general,” because, although it’s a fantastic help, I have learned a couple other hard lessons in this past year:
*There are definitely times and places where using the Vmax is very effective and other times and places where it really isn’t. It does help when, at least initially, people can see the screen and what I’m doing, but, in very general terms, the more comfortable (or sometimes even just familiar) people are with my speech, the less patient they are with my using the Vmax.
*Not unrelated to this and an even more difficult lesson is that, when I use the Vmax, people still have to stop and take time to listen to what I say. The difference with the Vmax is that - and this is a choice for those who know me - people don’t have to make the effort to try to understand my speech, but the hard fact is that, unless I pre-program it, I can’t casually toss off a comment.
I have learned other things - like typing in an initial comment before I approach someone and it sometimes being better (and okay) to just use the touch screen - but, all in all, the Vmax is a fantastic, life-improving device, even when I just use it to listen to my iTunes when I go out. At a recent gathering, I was able to talk to many more people or people I couldn’t talk to before. For me, this is what it’s all about.
At the same gathering, I also discovered that reciting limericks, especially naughty ones, on the monotonic Vmax is quite amusing. (Perhaps I’ll have another video out on YouTube...)
Friday, June 3, 2011
One less light left on
It may be a bit harder to say that Wal-Mart is evil, now that the mega-retailer is going green. (In addition to recycling, energy-saving practices and all that good stuff, I read - no, I’m still not going there - that one can buy organic produce there.) Now that summer is approaching, and I’ve been making reservations, I’m here to say that it is Motel 6 that is evil. I see again that the light may well be left on but not for the disabled.
In a post last summer, I wrote about how I stayed quite happily and cheaply at Motel 6's - they suited my simple needs and limited finances quite nicely, thank you - until several years ago when they stopped having two beds in their wheelchair-accessible rooms, forcing me, in an unfair and discriminatory manner, to reserve and pay for two rooms for me and my attendant. I wrote about taking a trip and being pleased when a friend told me that the Motel 6 in Bishop, CA, has a wheelchair-accessible room with two beds, which I reserved, and then surprised when the the Super 8 Motel in Gustine, CA, where I had reserved a two-bed, wheelchair-accessible room in which I had happily stayed several times, turned out to be a Motel 6 but with the same nice wheelchair-accessible room with two beds.
Well, like I said, I’ve been making motel reservations recently. In planning the same trip in July, I called the Motel 6 in Bishop and got the two-bed wheelchair-accessible room. No problem. Then I called the now-Motel 6 in Gustine.
And I was told that its wheelchair-accessible rooms have only one bed.
Mmmmm.
No, make that grrrrr.
This is, as far as I’m concerned, proof. This is proof that Motel 6 is unfair and discriminatory to the disabled. Not only that, it is proof that Motel 6 is making money off the disabled.
If this is not evil, I don’t know what is.
I don’t know what the deal is with the Motel 6 in Bishop. It could be the only Motel 6 left with a two-bed wheelchair-accessible room. I don’t know whether to bless it or boycott it. I do feel a bit guilty about staying there, but, hey, it’s what I need and the right price.
In a post last summer, I wrote about how I stayed quite happily and cheaply at Motel 6's - they suited my simple needs and limited finances quite nicely, thank you - until several years ago when they stopped having two beds in their wheelchair-accessible rooms, forcing me, in an unfair and discriminatory manner, to reserve and pay for two rooms for me and my attendant. I wrote about taking a trip and being pleased when a friend told me that the Motel 6 in Bishop, CA, has a wheelchair-accessible room with two beds, which I reserved, and then surprised when the the Super 8 Motel in Gustine, CA, where I had reserved a two-bed, wheelchair-accessible room in which I had happily stayed several times, turned out to be a Motel 6 but with the same nice wheelchair-accessible room with two beds.
Well, like I said, I’ve been making motel reservations recently. In planning the same trip in July, I called the Motel 6 in Bishop and got the two-bed wheelchair-accessible room. No problem. Then I called the now-Motel 6 in Gustine.
And I was told that its wheelchair-accessible rooms have only one bed.
Mmmmm.
No, make that grrrrr.
This is, as far as I’m concerned, proof. This is proof that Motel 6 is unfair and discriminatory to the disabled. Not only that, it is proof that Motel 6 is making money off the disabled.
If this is not evil, I don’t know what is.
I don’t know what the deal is with the Motel 6 in Bishop. It could be the only Motel 6 left with a two-bed wheelchair-accessible room. I don’t know whether to bless it or boycott it. I do feel a bit guilty about staying there, but, hey, it’s what I need and the right price.
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