Exceptional disabled workers get their due

Your best hire could be someone with a disability

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disability comic strip

Submited by ChooseAbility's friend DavCat

Paul Campos blog entry "Frustrations" part 5

Well, here I am again, sitting in front of my computer writing about my ordeal with my broken down power wheelchair. Yesterday was Day 7 without being able to use my wheelchair, and it was another frustrating experience. When I woke up early in the morning on Friday, I tried to find out the status of my order by calling Invacare directly. It was then that I learned that not only was the order not placed, but that one of the parts wouldn't be available until Monday, October 29. There seems to be a two day leeway for the major piece to be ready for shipping. At first, they were talking about Wednesday being the earliest day it can be shipped, but after pressing them, the controller and one of the other parts, suddenly appeared on the computer screen of the representative I was speaking with. He was, further, able to figure out that all three parts will be shipped overnight on Monday. I then called the extremely nice young lady who handles the orders for the Vendor and she informed me that the credit card number was incorrect. After straightening that out, she told me she would get back to me sometime later. She never did get back to me, but I already pushed Invacare to give me the information I needed.

I must say I am not as angry as I was the other day, but that's probably because I'm channeling my energy into writing which will ultimately help me get the word out about this situation. I'm lucky to have the kind of home care that helps me to keep on moving forward so I can tackle whatever life wants to throw at me. Dealing with the bureaucracy isn't fun and surely isn't easy. If you are reading this and the subject interests you, e-mail it to a friend. Getting the word out is exactly what will help to change things from the absurd, to something that actually makes sense. The more the merrier, I always say. We'll see what Monday brings.

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Matt Savage, a 15-year-old jazz prodigy who also happens to be mildly autistic, says "a lot of times, there's a hidden gift in people. For me, I guess it was music."

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Paul Campos blog entry "Frustrations” part 4

Yet another day has gone by where assurances have been made to speed up the process by which I will get my wheelchair serviced and back to me quickly. Customer Service, are two very interesting words in this 21st century. It seems that in the last decade or so, when we call customer service, we can never be sure what we are going to hear. Depending on who you talk to on a different day, different hour, or minute, each representative will tell you something different. A woman at Invacare refused to answer questions that would have helped the vendor know exactly what parts to order so that there is no confusion. I, then, spoke to a man named John in tech support and he told me that the woman is lying about not being able to at least answer questions. After trying again, I spoke to a different individual and she was able to help me. These customer service representatives are never on the same page. I guarantee if you call five times in one hour you will get five different responses. Don't these people ever go to staff meetings? It is unbelievable.

Anyway, I told the other vendor what was going on, so she took down the credit card number and said she would order it overnight mail. Let's see. Maybe I will be up and running as early as tomorrow. If I can pull this off I will have effectively blown "the process" right out of the water. That's when the News, Congress, and everyone else within hearing distance will hear about this. Maybe then we can start to make changes that make sense for everyone.

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Paul Campos blog entry "Frustrations" part 3

Today is Wednesday and I spent most of my day calling surgical supply companies who say they carry "parts" for my TDX3 power wheelchair. Unfortunately, they would have to do the same that I've been doing for the last couple of days -- talking to customer service at Invacare to ascertain whether or not they have the parts that need to be ordered to fix my wheelchair. There are no dealers who have the parts in stock in case people want to buy them. I don't know about you, but this scenario doesn't feel right at all. This situation is affecting many others who depend on their wheelchairs in order to get around and live their lives. Something has to be done to make it easier for people to keep their equipment in working condition, or, at least to have an alternative that will keep people active. One thing that would be helpful would be to have the main parts (such as "the brain" or, in other words, the part that controls the wheelchair) available at the vendor where the individual originally purchased the wheelchair. It wouldn't be feasible to have all the parts available, but at least the ones that allow the chair to run in the first place. Things like casters, batteries, tires, etc. can always be ordered whenever it is needed. This way, the consumer will not be inconvenienced for more than two or three days. A person in my condition, however, cannot be immobile for much longer than that. My situation has left me high and dry, unable to accomplish some of the things I needed to do. Some of which would have made me some money, and believe me, that is something I truly am lacking at the moment.

One of my friends offered to buy the parts that I need in order to "get me back to business". Let's see what happens tomorrow when I try to find a way to get another vendor to purchase and order the parts I need for my TDX3.

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Paul Campos blog entry "Frustrations" part 2

It is now 8:00 PM on Tuesday evening and I just finished eating my breakfast and getting up into my wheelchair. I'm going to write about my harrowing experience today. My personal assistant left early this morning to take my motorized wheelchair to Bethpage, Long Island via subway and the Long Island Railroad. Since I can't use any other wheelchair, I had to lay in bed as one of my other personal assistants took care of me until my wheelchair was returned to me. From my bed, I spent the day calling Invacare (the wheelchair manufacturer) trying to find out about parts. I discovered something quite interesting. If I am not a Vendor (or surgical/medical supply company), they are not allowed to speak to me. Not even to ask any questions. Oh, talk about your free trade in America. I then decided I would call the surgical supply company in Long Island to find out what was going on with my wheelchair and to also find out how we can get me up and running faster. After finding out that they could not fix my wheelchair, I began to speak with a man named Dave about what the next step would be. He said they would have to send the controller module to the manufacturer so that they could evaluate it, repair it if they can, and then ship it back (which would take 21 days). "HCS" could then send "the claim" (along with the price) to Medicare for approval. This could add 7 to 14 days more to the process. In the meantime, HCS doesn't have a loaner chair that would be appropriate for me, one with a headrest, nor a loaner with fiber optic controls which would be the only way for me to operate my chair. I then tried to ask how we could cut through the red tape and I was told that there isn't any way to cut through the red tape. I then asked if it were possible to order a new controller module, especially because I know from experience that when they fix these things, it wouldn't take long before I would have to go through this again. This time, Sonya got on the phone to tell me "absolutely not". She said, "We have to follow procedures (as I just explained above) and that doesn't include putting in the claim for a brand-new controller module". I then asked if someone can purchase the controller on my behalf. "Absolutely not", was her response. I also tried to find out if anyone sells refurbished ones and the answer was no. As you can imagine, my frustration was building to a crescendo.

My exchange with Sonya was the most incredible of all.

After saying that she is the one who handles the claims, she told me insurance has nothing to do with whether or not someone can purchase the item on their own, nothing to do with the procedures, and nothing to do with the speed in which someone can get their wheelchair fixed. If insurance is not the issue here, what would be the reason for not allowing someone to purchase a part for a wheelchair? What would be the reason for not allowing someone to put in "The claim" for a new item through Medicare? Why should it be that we must fix something that is the most important part of this wheelchair instead of buying a new one? I submit to you that they would rather repair the controller module claiming that it costs less to fix than to buy, while all along knowing that a repaired piece of equipment has more of a chance of breaking down again. This means they can try to bill Medicaid again and again probably costing more than if the piece was brand-new. I know it sounds like a conspiracy theory, but everybody knows that medical equipment prices are ballooned because they are deemed medically necessary. Because of that fact, vendors can get away with murder which holds the government (by the cojones), rendering them helpless as to what can be done about it. I remember being told this in 1995, when I went with a group of my coworkers to the headquarters of Senator Bruno in New York City. People with disabilities were protesting cuts in Medicaid (Home Care hours from 24 to just 4 hours a day). This would have sent many to nursing homes, which, in turn, would actually kill many. They wouldn't even talk to us until we formed a wheelchair blockade with the assistance of our friend, Senator Tom Duane, who is both literally and figuratively larger than life. The greatest thing was when some of the employees who worked in the same building tried to walk over and between the wall of wheelchairs, Tom Duane informed them they would have to get through him first. Obviously, they didn't try anything.

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Paul Campos blog entry "frustrations" Part 1

It sure seems to me, as I sit here in my motorized wheelchair immobilized for the third day in a row, life is made up of a series of events that either make you or break you. While it is true that everyone experiences frustrations, there are some that are unique. This time, however, it is my intention to take my frustrations and channel them for the good of all those with similar circumstances.

First, let me explain the disastrous scenario I find myself in. Friday night (October 19) I was sitting in my room helping a friend on my computer. As always, I tilted my wheelchair up and then down to relieve the pain caused by my headrest. When I tried to drive my chair into the living room, the chair would not respond. After some troubleshooting, I realized that this would be the beginning of what could be a long weekend, and then some. I ended up going to bed resigning myself to deal with this the following day.

On Saturday, I spent the day surfing the web and making phone calls to see if I could get my hands on a power chair rental, or to find out the cost and the attainability of wheelchair parts. Needless to say, there was nothing I could do over the weekend. Today (Monday) I wasn't feeling very well, but I was able to make an appointment with Homecare Supply for tomorrow. This surgical supply company originally handled the purchase of a ride power wheelchair back in 2004.

An Uphill Battle

This is an inspiring story for all of us who think things are hard. Ralph Gree, a New York City native, received an Edward R. Murrow Award. Seems like both of them deserve an encore:

"When you have two legs and you become disabled, you feel that a part of you is taken away. You feel that you may not be able to walk faster than the next person. ... But skiing is a level playing ground."

Ralph Green...
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Paul Campos comment on "A Beautiful Mind" post

A Beautiful Mind is a fascinating article posted by ChooseAbility's Art. It is quite clear that there is a stigma associated with schizophrenia which for many years has been difficult to shake. It seems that most people would rather run away from those who are diagnosed with it. In my experience with the Arts, it has always been a fascination to see the work of Vincent van Gogh. In my opinion, his artwork epitomizes the role that schizophrenia can play in artistic expression. If you have ever seen the film, "Kurosawa's Dreams", it is easy to see how much an artist, obviously influenced by schizophrenia, can affect another artist's work. What Kurosawa does with Vincent Van Gogh's paintings really captures the imagination. It is easy to see that Kurosawa was truly inspired by Van Gogh in his short story. Here, have a look at this!



The other thing that I like about this article is the optimism Stuart Baker-Brown expresses here. He says, "The link with creativity and schizophrenia has always been evident. Yet research into the understanding of these links has been very limited.
Thankfully, East Carolina University, the Natural Sciences and Engineering Research Council of Canada, and the National Institutes of Health in Britain are starting to research the links between schizophrenia and aspects of human creativity and cognition".

I hope he's right! It would be nice to see something that has been so stigmatized turn into something that can be harnessed to create artistic expression and at the same time destroying the stigma created by society.

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Wonderful great thing to do...
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