If you are attacked in a Marriott hotel parking garage or lot, too bad, so sad. You should have known better.
I've always been a big fan of Marriott hotels. I can't think of one time when I've stayed in an accessible room that wasn't. (Traveling with a wheeler.) The staff have been pleasant but not overbearing or sickly sweet.
Check here for the whole story: http://content.usatoday.com/communities/hotelcheckin/post/2009/08/68496944/1
Marriott eventually - three years later - issued an apology but apparently not directly to the victim.
A woman was leaving the hotel with her two little kids. She was in the garage, packing up, when a rapist grabbed her, put a gun to her head, and sexually assaulted her.
And the Marriott lawyers said, hey, it's her fault.
If you're a person with a disability, your risk of being victim of a violent crime is 4% - 10% greater than an AB's.
Not a pleasant thing to think about, but it's a consideration. Especially if you're staying at a Marriott.
Grrrr...
Sunday, August 16, 2009
Saturday, August 15, 2009
All The News That's Unfit to Print
In the past ten minutes, I've read two news stories that have me seething with frustration.
The first was that a court in Australia has decided to let a quadriplegic man starve to death if he wants to. This is way too much like that misdirected (if you'll excuse the pun) schmaltz, "Whose Life Is It, Anyway?". In the news report, it's not mentioned how long the guy has been a quad. It may be as little as a year. I'm sorry, a year is not long enough to recover from the trauma and adjust to a new life.
The man complains that he can't even read a newspaper by himself anymore. I'm gobsmacked. Has no one in Australia or even his nursing home ever heard of assistive technology? Or even a mouth stick?
I realize that newspapers can't accurately reflect reality. They have limited space, but I don't think there are limited pixels. What's the real story here? How long has he been injured? Did he receive counseling? Physical therapy? Is he, for some reason, unable to control a power chair?
Even if he's been asking for this ruling since November 2008, when he moved into this nursing home, that's not long enough to decide a life or death issue. It isn't.
Granted, I have not been in his position, but I know plenty of other people who are and none of them are sitting around moaning about wanting to die.
The other story is about a five year old boy, Hassani Campbell, who has cerebral palsy and is missing. I'll leave the editorializing about the situation, because I want to focus on this statement from CNN.com:
cerebral palsy is a debilitating brain disease that inhibits motor skills.
This makes it sound like...well, like MS, where the condition may drastically worsen over time. I realize that there can be cognitive deficits involved with CP but has never been the case with CPers I've encountered.
Here's a definition from the Internet, so you know it's true:
a loss or deficiency of motor control with involuntary spasms caused by permanent brain damage present at birth
I realize that in the greater scheme of things, these two incidents may dwindle in importance.
Still, shoddy reporting, incomplete reporting and untruths annoy me. A lot. And I think diminish the people they're writing about.
Get your facts straight. And get them all. And shame on any editor who keeps them from hitting the screen the way they were meant to be.
The first was that a court in Australia has decided to let a quadriplegic man starve to death if he wants to. This is way too much like that misdirected (if you'll excuse the pun) schmaltz, "Whose Life Is It, Anyway?". In the news report, it's not mentioned how long the guy has been a quad. It may be as little as a year. I'm sorry, a year is not long enough to recover from the trauma and adjust to a new life.
The man complains that he can't even read a newspaper by himself anymore. I'm gobsmacked. Has no one in Australia or even his nursing home ever heard of assistive technology? Or even a mouth stick?
I realize that newspapers can't accurately reflect reality. They have limited space, but I don't think there are limited pixels. What's the real story here? How long has he been injured? Did he receive counseling? Physical therapy? Is he, for some reason, unable to control a power chair?
Even if he's been asking for this ruling since November 2008, when he moved into this nursing home, that's not long enough to decide a life or death issue. It isn't.
Granted, I have not been in his position, but I know plenty of other people who are and none of them are sitting around moaning about wanting to die.
The other story is about a five year old boy, Hassani Campbell, who has cerebral palsy and is missing. I'll leave the editorializing about the situation, because I want to focus on this statement from CNN.com:
cerebral palsy is a debilitating brain disease that inhibits motor skills.
This makes it sound like...well, like MS, where the condition may drastically worsen over time. I realize that there can be cognitive deficits involved with CP but has never been the case with CPers I've encountered.
Here's a definition from the Internet, so you know it's true:
a loss or deficiency of motor control with involuntary spasms caused by permanent brain damage present at birth
I realize that in the greater scheme of things, these two incidents may dwindle in importance.
Still, shoddy reporting, incomplete reporting and untruths annoy me. A lot. And I think diminish the people they're writing about.
Get your facts straight. And get them all. And shame on any editor who keeps them from hitting the screen the way they were meant to be.
Thursday, July 23, 2009
Staying On Task
I have other issues besides BIID. (There. I admitted that I have BIID. More on that some other time.) I've been dealing with them as long as my manageable BIID.
The depression I have isn't very manageable.
My experience with psychiatrists, overall, has not been a good one. More often than not, he tries to impose his will on me without asking me what it is I need and where I want to get to with the assistance of medication he prescribes.
This week was my latest dance with psychiatry. I knew I would have to address BIID and likely would have to explain it, but I also knew I would have to get past it.
I had to address BIID because my referral to this particular psychiatrist came by way of a BIID researcher, although it was a colleague-of-a-colleague deal. This new doctor asked how I came to be referred to him. I explained and said, "But I'm here to deal with depression, not BIID. That's under control."
We talked about BIID, which he hadn't heard of before. He was deeply interested in it and said he had heard of body dysmorphic disorder. He wanted to know more.
His fee is outrageously high, but having dealt with bad doctors before, I know good ones can be well worth the price. Still, I wasn't there to educate him. There are web sites. He's a very intelligent man. He can Google like the rest of us and will no doubt come up with the sites I would have recommended.
I think one of the tasks that faces a person with BIID seeking help with mental health issues is moving beyond BIID, and more importantly making sure the doctor sees beyond it too.
Hey, it's a new thing. It's a cool thing. It's kind of a funky thing for doctors to wrap their heads around.
Part of my responsibility as a patient is to know as much I can and truthfully report as much as I can about my condition. I know the difference between BIID-induced blues and the long-lasting depression that has been with me for a very long time. In this meeting, I had to make sure the doctor saw beyond the interesting and new and moved on to the particular problem at hand.
I pushed him not merely once or twice but three times to move on. Again, he's a smart man, so he got it and we moved on.
I don't doubt that one day we'll revisit BIID, but it will likely be on his dime and not mine.
The depression I have isn't very manageable.
My experience with psychiatrists, overall, has not been a good one. More often than not, he tries to impose his will on me without asking me what it is I need and where I want to get to with the assistance of medication he prescribes.
This week was my latest dance with psychiatry. I knew I would have to address BIID and likely would have to explain it, but I also knew I would have to get past it.
I had to address BIID because my referral to this particular psychiatrist came by way of a BIID researcher, although it was a colleague-of-a-colleague deal. This new doctor asked how I came to be referred to him. I explained and said, "But I'm here to deal with depression, not BIID. That's under control."
We talked about BIID, which he hadn't heard of before. He was deeply interested in it and said he had heard of body dysmorphic disorder. He wanted to know more.
His fee is outrageously high, but having dealt with bad doctors before, I know good ones can be well worth the price. Still, I wasn't there to educate him. There are web sites. He's a very intelligent man. He can Google like the rest of us and will no doubt come up with the sites I would have recommended.
I think one of the tasks that faces a person with BIID seeking help with mental health issues is moving beyond BIID, and more importantly making sure the doctor sees beyond it too.
Hey, it's a new thing. It's a cool thing. It's kind of a funky thing for doctors to wrap their heads around.
Part of my responsibility as a patient is to know as much I can and truthfully report as much as I can about my condition. I know the difference between BIID-induced blues and the long-lasting depression that has been with me for a very long time. In this meeting, I had to make sure the doctor saw beyond the interesting and new and moved on to the particular problem at hand.
I pushed him not merely once or twice but three times to move on. Again, he's a smart man, so he got it and we moved on.
I don't doubt that one day we'll revisit BIID, but it will likely be on his dime and not mine.
Thursday, July 9, 2009
I Cannot and Will Not Hook You Up
If there are male devs who read this, please keep it to yourself. Do not IM me. Do not email me. Do not comment on this blog. Do not pass go and do not collect $200.
I was contacted via IM today by someone who asked me if I'm disabled and then asked me if I could refer him to a chick with a disability.
This was creepy and slightly disgusting. I've now had direct experience with why male devs are regarded with suspicion.
You know, generally I'll talk to anybody about anything. But this guy went right to the heart of the matter and the third IM he sent me asked me about my disability and if I'm a wheeler.
When I've chatted via IM with guys with disabilities, the disability rarely features in the conversation. It's more of 'what kind of person are you, what do you like to do, how's life treating you' than 'please tell me the level of your SCI, whether you have sensation or not and what adaptive equipment you use.'
Please, there are web sites for that. Go off with your icky friends and play your icky games there.
And what makes you think my gurlfrens need or want to talk to the likes of you?
Perv.
I was contacted via IM today by someone who asked me if I'm disabled and then asked me if I could refer him to a chick with a disability.
This was creepy and slightly disgusting. I've now had direct experience with why male devs are regarded with suspicion.
You know, generally I'll talk to anybody about anything. But this guy went right to the heart of the matter and the third IM he sent me asked me about my disability and if I'm a wheeler.
When I've chatted via IM with guys with disabilities, the disability rarely features in the conversation. It's more of 'what kind of person are you, what do you like to do, how's life treating you' than 'please tell me the level of your SCI, whether you have sensation or not and what adaptive equipment you use.'
Please, there are web sites for that. Go off with your icky friends and play your icky games there.
And what makes you think my gurlfrens need or want to talk to the likes of you?
Perv.
Sunday, June 28, 2009
Lies Employers Tell
I worked for a Fortune 500 company for about a year, in their Human Resources / Human Capital (I hate that expression) / Personnel office. I was doing IT work and didn't do any hiring except for the person to replace me when the time came for me to move on.
It was stunning to see how a pervasive discriminatory mindset worked in what should have been an open-minded and totally law-abiding setting.
Applicants with "obviously black" names (Tanisha and Shaquan are two I remember) were not considered for employment. If your name was Justin, Kate, Josh, Heather or something along those lines, you were considered for employment.
When the company moved into its huge new headquarters, the design was bad. Very, very bad. One woman in HR had multiple sclerosis. She used one forearm crutch and easily got around the older, smaller building. In the new building, she was unreasonably far away from accessible parking and, more importantly, a bathroom. The cafeteria was a hike even for AB me. She voiced her dismay to management.
The company response was to get her a scooter to use at work.
Although she knew it was pointless and didn't resist, her dismay deepened and she grudgingly used the scooter. I'm guessing she disliked being forced "down" to a scooter and in reality although it gave her distance, it did not give her greater maneuverability. Too bad.
I left that company and went to a much smaller company. My manager frequently handed me job reqs to review for the department. Three times, I pointed out to him that the job req's specification for being able to lift 25 pounds was not accurate and might be construed as blocking the way for someone with a disability. I have never in my IT career been forced to lift anything weighing more than five pounds. My manager was surprised and offended. "But we would make an accommodation," he said. And I knew that was a lie.
Last week, I had an interview at a very, very big company. I had been using crutches while my leg was on the mend and on that day, my leg still hurt. It didn't matter. I set them aside for the duration of the interview.
I wasn't prepared for the amount of walking I had to do. Up stairs. Down stairs. In my lady's office. By the time it was over, I was limping noticeably. When I got home, I settled on the couch with a pile of pillows under my leg. I stayed on the couch for the next two days and when I moved around, it was with the aid of crutches.
Imagine my non-surprise when I did not get the job.
It was stunning to see how a pervasive discriminatory mindset worked in what should have been an open-minded and totally law-abiding setting.
Applicants with "obviously black" names (Tanisha and Shaquan are two I remember) were not considered for employment. If your name was Justin, Kate, Josh, Heather or something along those lines, you were considered for employment.
When the company moved into its huge new headquarters, the design was bad. Very, very bad. One woman in HR had multiple sclerosis. She used one forearm crutch and easily got around the older, smaller building. In the new building, she was unreasonably far away from accessible parking and, more importantly, a bathroom. The cafeteria was a hike even for AB me. She voiced her dismay to management.
The company response was to get her a scooter to use at work.
Although she knew it was pointless and didn't resist, her dismay deepened and she grudgingly used the scooter. I'm guessing she disliked being forced "down" to a scooter and in reality although it gave her distance, it did not give her greater maneuverability. Too bad.
I left that company and went to a much smaller company. My manager frequently handed me job reqs to review for the department. Three times, I pointed out to him that the job req's specification for being able to lift 25 pounds was not accurate and might be construed as blocking the way for someone with a disability. I have never in my IT career been forced to lift anything weighing more than five pounds. My manager was surprised and offended. "But we would make an accommodation," he said. And I knew that was a lie.
Last week, I had an interview at a very, very big company. I had been using crutches while my leg was on the mend and on that day, my leg still hurt. It didn't matter. I set them aside for the duration of the interview.
I wasn't prepared for the amount of walking I had to do. Up stairs. Down stairs. In my lady's office. By the time it was over, I was limping noticeably. When I got home, I settled on the couch with a pile of pillows under my leg. I stayed on the couch for the next two days and when I moved around, it was with the aid of crutches.
Imagine my non-surprise when I did not get the job.
Monday, June 22, 2009
The Un-Social Contract
For about the past week, I've been mostly on crutches. In a dazzling display of balletic grace, I fell up the stairs to my house.
I have gone through the usual everyone wants to help business and honestly, have been grateful to have doors held open for me. But today I realized that if the doors slid open automatically, this would have been a non-starter. Most of the doors I went through were doors to public buildings. It was easier to get into the door of a house than the door to my library.
What I have not been so crazy about is people presuming they can touch me - people I've never met before in my life, non-medical people. I'm sure it's well-meant, but it can literally throw me off balance. Reaching around me, reaching in front of me, reaching for my crutches, reaching for me, these are movements that can startle me. I'm not steady on my pins to begin with.
There seems to be a general understanding that the public could and should help someone who is obviously temporarily disabled. The kind of crutches I've been on are the apres-ski break kind, the underarm crutches now in a light and easily maneuvered aluminum.
It was very, very, very weird when I initially showed up at the urgent care facility after my failed gazelle-like spring up the stairs.
I couldn't walk at all on my own, but someone had passed along a pair of forearm crutches to me long ago, saying, "You'll never know when you might need them." Although they didn't do the trick, they got me from the car into the building, which I wouldn't have been able to do unaided.
I gimped my way into the check-in and the freak-out immediately began. I was offered a wheelchair and gratefully took it. When the nurse came in to take my bp and temperature, she looked at me from the corner of her eyes. "What's your underlying condition," she half-whispered to me.
Clumsiness? Hastiness? A pair of really vicious fake Croc shoes?
"A hurt leg," I said.
"Oh. It was hurt before?"
"No, I hurt it an hour ago."
"Not MS?" (The staff at this particular facility has been trying to assign MS to me for the past two years. I have never been diagnosed with MS and I don't have any symptoms of it.)
"No."
"Then why do you have those crutches?"
"To get me from the car to this building."
The nurse went away. The doctor came in, looked at me, declared that I needed a CT scan, that the operator had left half an hour ago, and I would have to go to the hospital. The doctor left and no one came back in. No one. No one came to give me anything for pain, to help me get dressed, they just left me there.
I dressed myself, took the new pair of aluminum crutches offered me, got into my car and drove myself to a completely different hospital's ER. I used the aluminum crutches to go in and there was given pain medication and was talked to like a human being.
It made me wonder how someone with a pre-existing disability is treated when he goes into an ER with a completely unrelated problem. I hope you aren't shunted off to the side like I was. But it wouldn't surprise me if you were.
I'm gradually getting better but not as quickly as I would like.
I have an interview for a contract gig tomorrow and do not want to walk in on crutches. Neither kind.
I have gone through the usual everyone wants to help business and honestly, have been grateful to have doors held open for me. But today I realized that if the doors slid open automatically, this would have been a non-starter. Most of the doors I went through were doors to public buildings. It was easier to get into the door of a house than the door to my library.
What I have not been so crazy about is people presuming they can touch me - people I've never met before in my life, non-medical people. I'm sure it's well-meant, but it can literally throw me off balance. Reaching around me, reaching in front of me, reaching for my crutches, reaching for me, these are movements that can startle me. I'm not steady on my pins to begin with.
There seems to be a general understanding that the public could and should help someone who is obviously temporarily disabled. The kind of crutches I've been on are the apres-ski break kind, the underarm crutches now in a light and easily maneuvered aluminum.
It was very, very, very weird when I initially showed up at the urgent care facility after my failed gazelle-like spring up the stairs.
I couldn't walk at all on my own, but someone had passed along a pair of forearm crutches to me long ago, saying, "You'll never know when you might need them." Although they didn't do the trick, they got me from the car into the building, which I wouldn't have been able to do unaided.
I gimped my way into the check-in and the freak-out immediately began. I was offered a wheelchair and gratefully took it. When the nurse came in to take my bp and temperature, she looked at me from the corner of her eyes. "What's your underlying condition," she half-whispered to me.
Clumsiness? Hastiness? A pair of really vicious fake Croc shoes?
"A hurt leg," I said.
"Oh. It was hurt before?"
"No, I hurt it an hour ago."
"Not MS?" (The staff at this particular facility has been trying to assign MS to me for the past two years. I have never been diagnosed with MS and I don't have any symptoms of it.)
"No."
"Then why do you have those crutches?"
"To get me from the car to this building."
The nurse went away. The doctor came in, looked at me, declared that I needed a CT scan, that the operator had left half an hour ago, and I would have to go to the hospital. The doctor left and no one came back in. No one. No one came to give me anything for pain, to help me get dressed, they just left me there.
I dressed myself, took the new pair of aluminum crutches offered me, got into my car and drove myself to a completely different hospital's ER. I used the aluminum crutches to go in and there was given pain medication and was talked to like a human being.
It made me wonder how someone with a pre-existing disability is treated when he goes into an ER with a completely unrelated problem. I hope you aren't shunted off to the side like I was. But it wouldn't surprise me if you were.
I'm gradually getting better but not as quickly as I would like.
I have an interview for a contract gig tomorrow and do not want to walk in on crutches. Neither kind.
Tuesday, June 2, 2009
Got Milk?
Last night, I watched "Milk."
The disability rights movement needs a Harvey Milk. If a martyr for the cause, how much the better?
What Milk had going for him was a constituency. From the time he was able to list businesses that were gay-friendly in the Castro until his assassination, he had a physically centered constituency that he could rally, excite, and motivate.
I knew a guy who said he always avoided being with other wheelers or people with a disability. "It looks too much like the bus from the group home just got in," he said. I think that's a fundamental error in thinking. Lucky for him, his parents were wealthy and handed him a business that grosses millions every year. He insulates himself with money.
Try these on for size:
"I don't hang around with other gays. It looks like Christopher Street on Halloween night."
"I don't hang around with other African-Americans."
"I don't hang around with other overweight middle-aged white chicks. It looks like the Red Hat Society just invaded."
Come. On.
How on earth can you create a movement when there's no solidarity? When you don't want to belong to the group you belong to? Despite what Disney and after-school specials try to tell you, the individual matters pretty much squat. If you get a thousand, twenty thousand, a million people to come together, that's a force greater than one. That's a force that can gather and display its power in how it votes, businesses that are frequented, products that are bought.
At this point, you're only disenfranchised if you want to be.
Are people afraid of the angry, bitter cripple stereotype? What's the price of speaking up? Is it really that hard to get angry, disenfranchised people to speak up?
I admit I am not hooked in to the disability rights movement. If there's a Harvey Milk out there, I'm unaware of it and would love to hear that there is.
Please. Prove me wrong.
The disability rights movement needs a Harvey Milk. If a martyr for the cause, how much the better?
What Milk had going for him was a constituency. From the time he was able to list businesses that were gay-friendly in the Castro until his assassination, he had a physically centered constituency that he could rally, excite, and motivate.
I knew a guy who said he always avoided being with other wheelers or people with a disability. "It looks too much like the bus from the group home just got in," he said. I think that's a fundamental error in thinking. Lucky for him, his parents were wealthy and handed him a business that grosses millions every year. He insulates himself with money.
Try these on for size:
"I don't hang around with other gays. It looks like Christopher Street on Halloween night."
"I don't hang around with other African-Americans."
"I don't hang around with other overweight middle-aged white chicks. It looks like the Red Hat Society just invaded."
Come. On.
How on earth can you create a movement when there's no solidarity? When you don't want to belong to the group you belong to? Despite what Disney and after-school specials try to tell you, the individual matters pretty much squat. If you get a thousand, twenty thousand, a million people to come together, that's a force greater than one. That's a force that can gather and display its power in how it votes, businesses that are frequented, products that are bought.
At this point, you're only disenfranchised if you want to be.
Are people afraid of the angry, bitter cripple stereotype? What's the price of speaking up? Is it really that hard to get angry, disenfranchised people to speak up?
I admit I am not hooked in to the disability rights movement. If there's a Harvey Milk out there, I'm unaware of it and would love to hear that there is.
Please. Prove me wrong.
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