It is quite sad that the disabled have the hardest time in getting a job and when they do it is usually a low paying job tied to a boss that thinks they are stupid. Even in the best of financial times it is difficult for the disabled to find a good job. In this complete meltdown of many sectors of our economy makes it all but impossible for the disabled to get good employment. We are competing with people that are over qualified for a position but is in need of money to keep their house and car that they will do almost any job. So the low end jobs are going to engineers with master’s degrees that would never take that job except that there is nothing available in their market and they have been out of work for the last 18 months. The only answers I can think of is schooling and working for yourself. Because many of us are on SSDI or worse, it is very easy to get money to go to school – all the way to PhD. That would give anyone a huge boost in their ability to get a job and to increase their income. Of course it is a lot of work over many years, but then again nothing that is worthwhile is simple or easy. So we get to decide what we will do with our lives, sit at home staring at the boob tube, or get off our collective wheelchairs and get back to school and work.

There are many positions for teching available for secondary as well as college and research. I have found that schools are much more willing to take a chance on someone that is disabled than a company and they are easier to work for. Some universities are willing to put you through school to fill a job that they cannot find qualified people for. At a public university in Florida I saw a position open for a mathematical researcher and the school was willing to put you through to a PhD for free if you were willing to work at the university for five years. Not a bad deal – you get awesome paperwork and schooling for free along with a good job with benefits for the next five years or more. Stuff is out there for us, but we need to look for it and let the able bodied know that we are no different than they are, we are just stuck in a movable chair.

While it is great that a group has taken up the job of trying to help the disabled community to make good decisions on which games play well and which ones that are missing basic help for them, all game companies should think of the ADA during design phase. Typically it is not difficult to add difficulty levels or to add closed captioning since the characters are speaking the words anyways. Changes to keep colorblind players happy is also a relatively simple process because there are well known color combinations that cause grief and those could be easily changed in the graphics engine without any other modifications to how the game plays or how it looks.

One would think that game companies would want to add to the number of customers that can purchase and play their games if the work to do that is easy and cheap. But instead the game companies completely ignore the disabled community because there is no one to club them over the head to let them know that we exist. The lawsuit against Sony will wake that company up, but what about the others? The idea is to get them to make minor changes without pricing the company into bankruptcy because of legal costs or dramatically increased development costs. This could be fixed by adding a few disabled people to the testing teams so that fixes can be worked on right away and the company can get write-ups in disability magazines and websites saying they are working with the community to make their products available. This would open up a brand new market for arcade games to people that would love to play and pay for them but can’t because they are unplayable. But with a few changes we all can have fun on our computers and game consoles.

This is good news for the disability groups that were complaining that many of the candidates in the United States were not making their speeches and other materials available with captioning. This made it very difficult for disabled voters to get a true picture of where the candidates sat on particular issues and forced many to pick those candidates that did provide their materials in captioning. That is truly sad that candidates received votes merely because they made materials available in captioning because the other candidates didn’t think that the disabled were an important enough group to follow. The candidates need to remember that as the baby boomer generation ages they will become blind and hard of hearing over time. They will need to have things likme captioning from all the candidates or they will have to think that those that do not support those technologies are not disabled friendly. With all the problems that the disabled have just staying alive and well on a daily basis, fighting with their elected officials to gain access to the same things that the able bodied get for granted is not something we will put up with.

 The disabled are not usually thought of when designing a game, so it is great to see someone create a database of games and who can play them based upon ability. Perhaps if the disabled were to send letters to game companies like Electronic Arts and let them know that we buy games and would like them to keep us in mind when they design a new one. That we are customers that spend money like everyone else and that a little bit of work on their part to make games easier for the disabled to play could translate into more money and profit. In this way we all win, the game company gains a new player and the disabled person has something that they can get some joy off of rather than just surfing the Internet. It can be difficult to find games that match up with different medical problems, and it is not fair to expect that shoot-em up games or fast driving games are going to be easily played by those that are quadriplegic. We have to expect that all games will not fit everyone and that lawsuits will just turn the game companies away from us when we want them to think of us as a group that wants to play.

When I was first injured I was still able to play most arcade games well. However, after complications from CRPS (a nasty pain generator from spinal cord injuries) I can only play turn based games or card games. That is ok for me because I can still do fun things and just have to change what I look for in a game. The moral of the story here is to pick the game that fits with what we can do and not expect miracles from game companies or console producers. Most controllers have tiny joysticks and lots of small buttons to press. No quads need apply to those controllers and the games that use them. However not all consoles are the same – Nintendo has changed the game with their WII console. The WII controller is a dramatic change in game controllers and may be the first to be disabled friendly. By allowing the user to swing or twist the controller the gamer can duplicate the swing of a tennis racquet or the turn of a car steering wheel. This makes for a fun experience that does not require hitting a zillion buttons to make a game work. Hopefully the other game makers will take the WII controller and expand on it so that everyone, including the disabled will have an easier and fun time playing games.

It is sad that after all these years we have myopic management that does not know how to deal with the disabled. The disabled are looked as as somehow "broken" and unable to do any task at all. Instead of looking at all the jobs that can be done from a sitting position, the worker is tossed out and an able bodied worker is hired in their place. How are the disabled expected to take care of themselves and get off of federal aid if we are tossed out of work because management has no idea that we still have brains and can do many of the tasks we used to do. Paraplegics can do virtually any desk or computer job with few changes, if any to the environment. Perhaps the company needs to do a better job of hiring managers that do not look at the disabled as useless junk to be removed from the facility as soon as possible. There are many people that hate the disabled and cannot stand to be around them. This discrimination is disgusting and should be vetted from every company. There is no place in management for someone that cannot work with the disabled.

This a shot across the bow against haters of the disabled, and the companies who hire them. Managers should know the law and there is no reason why new hire training does not include info on the ADA. Why create a situation where you can and may well be sued if you can easily get around it. Disabled people work just as hard as anyone else and research shows they are a good fit in any organization. It is amazing how much griping disappears when everyone sees what a disabled person has to do to get their job done. Think about it the next time someone in a wheelchair is at your company looking for a job.

One would think that this was the script from a “B” movie in Hollywood, but states all over the country are debating the use of the New York protocols to determine what to do during an emergency and how to ration supplies that run low during a virus outbreak. However, public opinion has been strongly against any kind of rationing like this, and officials have worked hard to keep the public out of meetings that discuss these protocols. Our only safety net is that most states have not implemented this plan as law and most are worried what would happen to public opinion if they did put it into law. While officials are trying to state that this is for the national good and that work must be done to make sure medical care is available neglect to explain how this is going to occur. No one in any meetings to discuss the New York Protocols are willing to say that the will take ventilators and other lifesaving medical equipment from a person merely because they are disabled. We have not heard of something this sinister since the Nazi plan to rid the Reich of people that were “broken or not whole”. People that were forced to live in nursing homes because of disabilities were carted off to the same killing centers that the Jews were sent to. This law appears to allow the state to do the same type of thing under the veil of doctors and hospitals trying to give care to those that desperately need it.

People that live in states that frequently have disasters like Florida, Louisiana and California need to look carefully and see what their state officials are working on in this arena. If your state is looking to implement the New York Protocols you need to call everyone you know to put a stop to it. If this is allowed to become law then the governor of your state can decide at will that the disabled do not deserve to live and will be denied medical care that they may need to survive because others are felt to have a better chance to live. The control of life at this level is disgusting and it is sad that any doctors would be willing to put time and effort to make this a reality. No one should have the basic right to control who lives and who dies without having the family involved.

 Further problems were found in availability of clinics, tests for medical conditions and pills to control long term conditions. The disabled ran a much greater risk of hearing and visual problems as well as hypertension, obesity and a lack of instructions on how to deal with medical conditions. This creates an environment where those with good medical insurance have access to doctors that are trained to help their patients over a wide range of issues where the disabled typically have to deal with newly graduated doctors that do not have the training or experience to work with those with complicated medical issues. Since the medical infrastructure of the United States is on treating a problem rather than prevention, medical care is much more expensive than virtually anywhere else in the world.

Rather than working to make sure people do not get the flu or popular issues like hypertension or smoking, the medical community and insurance companies waits until the patient is severely sick before they get the care they need. This means that more disabled die or end up with additional medical conditions as compared to the able bodied that have corporate based medical insurance. Many pills are not available on Part B Medicare because they are new and expensive, and most companies have virtually non-existent system to help pay for drugs. This is especially true for those with chronic pain, where most pain medication is prohibitively expensive. As the body requires higher and higher doses to get the same pain relief level, stronger medications are required – that are not covered. Even if the medications are covered, the patient is only covered for the first $2700, after that the patent is on their own for the next $2000 before catastrophic care kicks in.

 This all creates an environment where preventative care is non-existent and only very expensive care is available. While this care is great for those that can afford it, for those that are either on Medicare or no plan at all live in excruciating pain or with out of control blood pressure because there is no treatment that the poor can afford. While there may be plans to help the public, the ADA is typically ignored by companies and cities that find it is easier to get sued than it is to build to code. We all need to work together so that the laws are followed and actually help the disabled to live a more normal life.

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.

Most elected officials are lawyers so one would think and hope that they could have some idea what the law of the land is. For those that are not lawyers, they need to get up to speed quickly as these people are making laws that effect all of us. We need to think carefully before creating new laws as they may be in violation of state or national law. The Americans for Disabilities Act is a federal law that requires that all states follow it. This includes city councils as well. Service animals are allows to go virtually anywhere that  a disabled person goes and that is the end of it. The disabled person needs that animal to get around and to help them do their daily tasks like shopping, working, or going to a city council meeting. It is sad that the mayor actually said that he was shocked that people actually thought they had the right to show up to a public meeting that will directly effect them. Maybe the mayor believes that laws and rules should be made in a vacuum without the benefit of hearing from those that live in his city? In our country, all of our voices are important which is why we have the 1st amendment to the constitution and we all have the right to vote for those that make our rules and laws. It is expected that we are listened to and that changes are made based on what the public wants.

The present work on changes to our medical system demands that we let congress know what we want. The President set up town halls meetings to hear what we had to say. Congressmen and senators have been listening to phone calls, faxes, emails, and letters from constituents that care about what happens to health care in this country. No where does it say that if you are disabled, please get lost. We didn’t hear the proclamation that if you have a service animal please do not show up to the town hall meeting. On the contrary, it was expected that the disabled would show up since they are dealing with the health care system know and would be the best people to hear what should be changed. Why are these meetings different than a city council meetings? Our congressmen understand how important it is to listen to what the voters what as they can be voted out of office if they don’t. This city council looked like they wanted to hand down their own edicts without understanding federal law and what the disabled are allowed to do.

The disabled have rights just like everyone else and special laws were passed to make sure everyone understood that. Unfortunately there are those that don’t want to see the disabled and wish they would go away. There were laws called "ugly" laws that were passed to get rid of the disabled so the rest of the population didn’t need to see them. The ADA forced those laws out of existence and made sure that the disabled had access to the same rights as everyone else. They can buy homes wherever they want, can own a car, go to college and have a family. They do not have to ask for permission or get a sign off before they have a child. Additional rights were given so that the disabled could interact with others, which included service dogs. Congress understood that the disabled needed more help and gave the disabled the right to get animal helpers and allowed them to go wherever the disabled person goes. Hopefully these stories will help to stop civil rights violations and let the country know what is going on. That is why we have freedom of the press…something that some people in this country wished didn’t exist either. We have a lot of work ahead of us to make this an equal country, but there are plenty of folks that want this to be so lets work together to make it reality.