Imagine being at war in the midst of battle without being aware of what was going on around you. Imagine having the desire to serve your country and help your fellow soldiers but you needed an aid to walk. This has been a problem for British soldier Craig  Lundberg for the past three years.  Craig Lundberg lost his vision after he was struck by a rocket propelled grenade in 2007.  

After his incident Corporal Craig Lundberg was the first to get his hands or should I say tongue on a new device called Brainport. You can say that he was a pioneer in using this device. Brainport allows him to see images from his goggles which are then translated with a simulation pattern to his tongue and converted into signals that can be understood by his brain. People who are visually impaired will learn to use this device by recognizing patterns, movement and also high contrast objects. What concerns me is what happens if this particular soldier gets the device damaged while on a mission? Does the device have some sort of backup software and is it durable enough to withstand the different environments and situations a soldier has to deal with in the time of war?

According to Lundberg he says that the device feels like “licking a nine volt battery” or “like popping candy”. This device has a great potential to change the lives of many people if released to the public. This device could help those who are visually impaired see their loved ones which could be an enormous advancement in life of people affected by this disability. Lundberg says “ One of the things it has allowed me to do is pick up objects straight away, I can reach out and pick them up when before I would be fumbling around to feel for them”. The value of this simple action is taken for granted by so many people. You can tell that life is a lot more easier for Lundberg and his family ….even more so than before. There has to be some feeling of relief within him that now he has the ability to do more things for himself as well as others.

Currently this revolutionary device being used is only a prototype according to Disability and Health News. hopefully the British army will find answers to these problems before it is used by other visually impaired soldiers.The neuropsychologist supervising this trial Maurice Pitito says that “ It’s a concept in which you replace a sense that was lost by another one.” Brainport can allow people who are visually impaired walk around without a cane. It gives them the opportunity to navigate obstacles and even the opportunity to read signs. It also allows them to get a feeling of the world from their tongue and that gives them a sense of seeing. Most people do not understand that you do not only see with your eyes but you see with your brain.

This is fantastic news for the disabled of this country. Finally someone will start to make it too expensive and difficult to use handicapped parking spots. We have all witnessed someone getting out of a giant Hummer and grab a giant box to walk into the mall. Those of us in wheelchairs know that we could never get into that vehicle let alone grab a box and carry it in across the parking lot. This doesn’t even cover those that park in the handicapped spots to run in and buy something like a sandwich and then peel out of the parking lot before the police show up. Or those that loiter in a parking spot while someone else goes in to do some shopping. These idiots do not realize that getting to or from our car to the store is very difficult and dangerous for us. The close spots let us get into the store safely and out of the elements, something that the able bodied can do by carrying an umbrella. That close spots also makes it easy to load our vehicle as we are not in the scorching heat or driving rain while groceries are being packed in the van. 

It is sad that people think of no one but themselves and do not realize what these parking spots are there for. What training courses could be generated that these people would be forced to take could let them know the added stress to our lives when they take our parking spots? If they do not care about anyone but themselves then perhaps giant fines will wake them up. At SCRN we always thought that a $100 or $200 fine for parking in the handicapped zone was not much of a deterrent. Most police do not look at who is parking in those spots and the fine is so small that most cities don’t bother with enforcement. But a $1000 fine is something that a meter maid could easily be tasked to look for and would be able to make money for the city. There are many programs that could be funded by the fines paid by drivers that think handicapped spots are for them and not those that have great difficulty getting around. 

Another way of enforcing these spots is to add driving points to the ticket. In cities that are always chronically short of parking spots paying $200 a month in fines is nothing compared to getting close spots that do not charge you for daily payments. For cities like New York a $1000 may be nothing compared to a close parking spot that could cost much more. Many in New York pay big bucks to be allowed to park in specific places that are close to work and malls. Since the disabled have nice close spots and don’t have to pay then it is definitely worthwhile to either park in a handicapped spot or pay for a fake placard. This may seem draconian until you are forced to go home and not go to the grocery store or doctor office because all the handicapped spots are taken and some of those spots are taken by the able bodied.

Researchers are finding out that CT Scan systems are emitting more radiation than they should in many hospitals causing patients to experience radiation poisoning type conditions. A school teacher went in for a CT Scan and over the next several weeks found her hair falling out in a arc from her left temple across the top of her head to her right temple. This was the exact area that was radiated by the scanner. She hired a lawyer to help her deal with the hospital and the lawyer found two other cases that were almost identical. Presently Cedar Sinai Hospital in Los Angeles is being investigated for giving excess radiation to more than 250 patients. Further research is finding that depending on the type of scan the radiation could be up to 13 times higher than normal. This extra radiation is dangerous and could potentially cause cancer or other diseases over time. Until these issues are solved in hospitals over the country doctors are recommending only performing scans if they are absolutely required. Since there is no way for the patient to determine which scanning systems are putting out too much radiation the best thing is to limit the number of actual scans. Experts in the field are working on standardization on the amount of radiation that is released for a particular scan so that doctors can control how much radiation their patients are exposed to. This is very important to spinal cord injury patients that often get CT scans to determine the damage of the spinal cord with respect to excess fluid in the cord. Getting a scan every three weeks or so is not unusual putting these patients in danger of radiation damage. (Source CBS News).

As always talk to your doctor to figure out the best and safest testing procedures for you. It is unfortunate that a testing platform that doctors and patients  have been depending on is found to be extremely dangerous. Until this is resolved it may be best to switch over to an MRI which uses magnetism rather than radiation to get the pictures. Obviously people that have metal objects in their bodies like cochlear implants or pain blockers cannot use the MRI or the implants would be damaged. We are all responsible for our own safety and that includes medical procedures and medicines. Everything has contraindications that need to be looked at to make sure that the test is not more dangerous than the issue we are testing for. That includes watching for things like this that your doctor may not know about. This is especially true of tests like CT Scans that have been around for a long time and  have not been reported to have issues. Radiation is something we should all be worried about regardless of the amount because it can potentially cause cellular or DNA damage over time. Just as CT Scans may have issues X-Rays could also be a problem if your doctor asks for a large number of them over a short period of time.

Search the Internet periodically for tests and medications that you are taking to verify that what you are taking are safe. You cannot expect that your doctor is up to speed on every change and issue that pops up. We all have to take responsibility to understand what is happening to us and any issues that could be tied to contraindications from both medications and procedures. These need to be watched for and the phone numbers for doctors and the hospital should be close by in case you need to talk to them. That way you can get the best care and be sure to know that if there is a problem medical personnel will know what to do so you are safe.

The American Red Cross is soliciting donations for help in Georgia. Feel free to help, but I have some questions I wish they would answer about their services to evacuees with disabilities:

Do evacuees in wheelchairs who seek shelter in Red Cross shelters in Georgia have accessible beds available to them, as required by the ADA?

 In Miami-Dade County, they don’t. They plan to get some, and plan to borrow some, but right now, 19 years after the passage of the ADA, they don’t have any.

Do evacuees who are deaf or hard of hearing who use sign language have access to qualified interpreters in shelters, in the event of a medical emergency, as required by the ADA?

 In Miami-Dade County, they don’t.

Miami-Dade County only offers “volunteer” interpreters, who lack knowledge of how to interpret the necessary medical terminology that would be required in such a situation. The Red Cross tells us: “We are a volunteer organization, so we use volunteers.” 19 years after the passage of the ADA, and the collection of millions of dollars in donations, they are still exploring ways to comply with the ADA.

Do evacuees who have mental illnesses, autism, or cognitive disabilities have a quiet area in the shelter, as a reasonable modification of policy?

In Miami-Dade, they don’t.

Under the ADA, the Red Cross and the County with whom they partner are both liable for the civil rights violations that occur in emergency management.

In its solicitation for donations, the Red Cross says that “Officials estimate more than 1,500 people may be seeking shelter.” Some of those evacuees are people with disabilities. What is the Red Cross doing to serve them? Where are the accessible beds? Where are the qualified sign language interpreters? How much of the money donated to the Red Cross, instead of to disability organizations serving evacuees with disabilities, actually go to serving evacuees with disabilities?

Are Counties that partner with the Red Cross aware that under the ADA they can be held liable for the failure to serve people with disabilities in general needs shelters operated by the Red Cross? Are they aware that under the Rehabilitation Act, they risk a cutoff of federal funding for violations of the ADA by the Red Cross?

Let’s never forget what happened to evacuees with disabilities in New Orleans with disabilities. As related in testimony before Congress by Marcie Roth:

On the morning of August 29th, I received a call that I will never forget and once I tell you about it, I hope you will never forget it either. My friend and colleague, former appointee to the Social Security Administration, Susan Daniels called me to enlist my help because her sister-in-law, a quadriplegic woman in New Orleans had been unsuccessfully trying to evacuate to the Superdome since Saturday. In my naiveté I thought a few phone calls to the “right” people would help, and I was sure I knew who to call. After many calls to the “right” people, it was clear that this woman, Benilda Caixetta, was NOT being evacuated. I stayed on the phone with Benilda for most of the day, assuring her that I was doing all I could to make sure help would be coming as soon as possible. She kept telling me she had been calling for a ride to the Superdome since Saturday, but, despite promises, no one came. The very same paratransit system that people with disabilities can’t rely on in good weather was what was being relied on in the evacuation. It’s no surprise that didn’t work.

I was on the phone with her that afternoon when she told me, with panic in her voice, “the water is rushing in” and then her phone went dead.

We learned five days later that she had been found in her apartment, dead, floating next to her wheelchair. http://www.spinalcord.org/news.php?dep=1&page=0&list=643

Marcie described the Red Cross’ efforts as follows:

“As well as the disability community came together to try to take care of “our own”, we have been excluded from the larger relief community and told that we would just be “in the way” and “make things worse”. I received report after report about the Red Cross shelters turning people with disabilities away or separating them from caregivers and service animals, then sending them to nursing homes when they couldn’t maintain their independence. When I inquired about the sheltering needs of people with disabilities, one Red Cross operations official told me “we aren’t supposed to help those people, the local health departments do that. We can’t hardly deal with the “intact” people. Don’t you understand that we’re taking volunteers off the street to run these shelters?”” http://www.spinalcord.org/news.php?dep=1&page=0&list=643

When the disability community, and their allies, are asked to donate to the Red Cross, don’t donors deserve some assurances that the donations will help evacuees with disabilities? Shouldn’t some of the donations be dedicated to purchases helping evacuees with disabilities? Shouldn’t some of the money go to purchasing the services of qualified sign language interpreters, video remote interpreting (VRI), accessible beds, and other services needed by evacuees with disabilities?

Can’t the Red Cross do a better job of planning on behalf of evacuees with disabilities? Can’t the Red Cross do a better job of serving evacuees with disabilities? Shouldn’t the counties that partner with them and the donors who support them demand that the Red Cross prioritize serving people with disabilities?

As for me, I will donate to the Red Cross when the Red Cross shows its commitment to the disability community.

Marc

See http://www.spinalcord.org/news.php?dep=1&page=0&list=643 for Marcie Roth’s testimony before Congress. Also  See Transcript of Hill Briefing on Disaster Response (11.10.05) (Word Document)

See Transcript of Hill Briefing on Disaster Response (11.10.05) (PDF Document)

Marcie Roth was subsequently appointed by President Obama to serve as FEMA’s Senior Advisor on Disability Issues.

If you are in a similar situation…here are some tips that may help you:

- www.caregiver.com
- www.nfca.com (National Family Caregivers Association)
- www.pulseamerica.org
- www.npaf.org (National Patient Advocate Foundation)
- http://www.accessiblesociety.org/topics/ada/olmsteadoverview.htm (Olmstead Act)

Remember…”to fight for your beliefs; you must believe in your fights”. I not only feel it’s worth fighting for my husband but that on some level Greg and I feel that we are fighting for you…the reader.

Again, thank you for your continued support.

The Roaring Mouse

1) Stock up on non perishable foods. Assume that if things get strange out there you may have to do things alone for about two weeks. Do this before your city/town announces that the Swine Flu is shutting down things like public transportation. Do not wait – as someone who has lived through many hurricanes, the public WILL PANIC and will strip the stores bare of everything, whether they need it or not. Do not expect anyone to do anything for you out of their good will. This is the fight/flight aspect of life and people will dump you on the floor if they think it will get them more food/water or a better place in line. Believe us, we have seen it happen.

2) Get anti-viral drugs before the rush. Ask your doctor for a prescription of Relenza or Tamiflu. Both dramatically reduce the symptoms of flu and the number of days you are sick. Have it in the house so if you do get sick, you do not have to hope the pharmacy’s have any left. Do not assume that the Government supply will make it to you. If it is needed by the able bodied somewhere else you will get hosed.

 3) Get surgical masks so you can be protected if you must go out in public  during an emergency. Get enough for at least two weeks and stash them away to be used later. Mexico is handing out masks to the public, but no one knows how good they are or for how long theyn can do this before they run out. This is good insurance to make sure your chance of getting sick is greatly reduced. Surgical 99% masks are a good kind to purchase. Read their instructions for use so that you are protected at all times.

4) If the flu hits your town/city cut down on seeing your friends and family unless absolutely required. The best way to keep from being infected is to reduce the number of people you see. Flu does not care about the status of a person, whether they are nice or go to a particular church. Anyone can be infected and they can infect people for days before symptoms appear. This means that someone may look fine, but could have the flu and can infect those around them. Presently the CDC and WHO do not know exactly how the flu is transmitted, but that it can easily be transmitted between humans. This is different to SARS which almost always required intimate contact with birds to be infected.

5) Don’t panic. Even if this becomes a pandemic, there is no reason to believe you will get it. That is especially true if you follow our simple ideas which minimize you interaction with anyone who may be infected. Keep your head so you will be prepared in an emergency situation. Those that are prepared and know what to do will be the ones that will be in good shape after everything blows by.

The Texas legislature just passed a law that all computer repairs and help must be done by a person that has a private investigator license. In order to get a PI license you must either go through a 3 year college level degree program or spend three years as an apprentice to a PI. The law stipulates that all companies repairing software and hardware problems, as well as individuals fixing their own or family PC problems must stop immediately or face 1 year in jail and $4000 fine. Unless a computer repair facility has on-staff PIs, they must close down immediately for three years until everyone becomes a PI. It is unknown how this will effect out of state help companies like Dell or Apple, but the way the law is written, if anyone helps you with a computer issue, you can be fined and thrown in jail. The Institute for Justice Texas CHapter is suing the state for all the companies and individuals that fix computers.

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