Tuesday, June 30, 2009

WordQ SpeakQ software demo

I'm trying out a 30 day demo for the WordQ SpeakQ software , which includes a speech recognition feature along with word prediction . I found out about it at Pitt Rehab.

So far I'm very pleased with it and getting excellent results in every application. It works better with a headset microphone, but it has been working with the built in microphone on my laptop well enough to browse the web, use social media sites and blog. This is a big plus, since I don't like wearing headsets.

I tweaked the settings a bit.

1. The software has settings which allow you to leave the microphone on all of the time, although the default setting turns it off if you edit. I found the default to be annoying because I was constantly turning the microphone back on.
2. The program will read words and sentences back to you if you don't change the settings, which I did, but that's a useful feature at times and for many with other disabilities.

As Greg pointed out, the only issue is that the software costs more than dragon naturally speaking, but considering how many hours a day it would save me, it's really a no brainer decision to put it on my wish list - in front of the bath lift I need. That's how good it is.

Seniors' falls from walkers and canes studied

A study showing that over 47,000 seniors are treated for falls annually from walkers and canes stated that more need to be shown how to properly use the devices safely, suggesting doctors do so prior to prescribing the mobility devices.

I have another take on this issue. I can't tell you the number of times I've been out and seen folks using canes or walkers when they clearly appear to be in need of a wheelchair. They may lack balance or the stamina, causing them to veer or stumble in a crowd. I'm not questioning the selection of the device for them some of the time, but it's clearly not working out in public in crowds.

I know many of my friends with long term disabilities use more than one type of mobility device, so when I see this, it makes me wonder if doctors are suggesting to seniors that a scooter or wheelchair might be a good idea for longer distances, although a cane or walker works at home. Such an approach might not only prevent falls, but maximizes the mobility of the person. It may conserve their energy so that when they are home alone, they are less likely to fall.

In order for this approach to work, however, we need to get beyond the stigma of using certain devices and certainly have to stop treating their use as an indication of not trying hard enough or failing at recovery. Certainly maximizing function is a good thing, but it becomes counterproductive when someone suffers multiple falls and resultant injuries, as I often see.

Monday, June 29, 2009

In search of....curb cuts?

In this video, Wheelchair Kamikaze, our host of past NY tours, goes in search of the Spirit of Audrey Hepburn statue in New York. However, he winds up spending quite a bit of his ride through NY city looking for curb cuts and facing some mighty big trucks head on....

Netflix, prize economics and awarding innovation

I have to give Netflix a lot of credit. They do a good job of keeping a customer happy.

For example, on Friday night I discovered one of the DVD's they sent me was damaged. I reported it, but because of the timing, they couldn't send a replacement in time for the weekend. Yet when I checked my queue, two of the movies in it were ready for streaming under instant play. This is, of course, in addition to all the movies already available to stream.

So when I read in the NY Times about how Netflix is using prize economics to find ways to improve their business, I wasn't surprised. It seems that they're running a contest with a million dollar prize awarded to "the first contestant that could improve the predictions by at least 10 percent" of the movies they recommend to customers. After three years and more than 50,000 contestants,

[o]n Friday, a coalition of four teams calling itself
BellKor’s Pragmatic Chaos — made up of statisticians, machine learning experts and computer engineers from America, Austria, Canada and Israel — declared that it has produced a program that improves the accuracy of the predictions by 10.05 percent. Under the rules of the contest, Netflix said that other contestants now have 30 days to try to do even better. If they cannot, BellKor’s Pragmatic Chaos will collect the $1 million.

Prize economics, according to the article, is a less expensive way to develop an innovation than in-house r&d. And that, of course, is a good thing for customers because it keeps prices down, while providing better services (in this case, improved movie recommendations).

I'll bet this same idea could be applied to some of the issues facing our government, like areas of health care reform. Imagine if this kind of innovative thinking and open ended approach toward improvement was applied to those areas where health care is costing consumers and insurers the most money. Perhaps those approaching the problem with a prize in mind would come up with innovations that might surprise Congress and the president. I'd be willing to bet that many Americans wouldn't mind awarding that kind of innovative thinking if it led to lowered costs and improved services.

Not that we can compare renting movies to health care - but, then again, in some aspects we can. Because there's no doubt from the discussions I'm hearing on health care that it's become a business in this country. The sooner everyone admits that, the faster we can get to solutions. Because the political discussions about health care aren't working - frequent allusions to party lines and repetitive, old arguments.

Prize economics and awarding innovative thinking. Gotta love corporate America. It's worth a try. Pass me one of those new wheelchair cushions for six hundred bucks - oh wait, let me buy half of one.

Sunday, June 28, 2009

If only Buddy had opposable thumbs...

And so I get emails asking me when I'm going to write about the backup aide.

Forget it. I want to.

There are a few logistical problems going on. Nothing those of you who have aides haven't seen before. You know how when you hire people they fudge answers to questions - and don't tell you they need to smoke every fifteen minutes? That's a bit of a problem when you're a quadriplegic around second hand smoke, even when the person smokes outside, if the windows are open in the summer. Or that because they don't have a car they expect you to be their taxi cab? Or they run out of money and need x,y, or z and have to borrow some for this or that and forget to repay it? Heck, if I had extra money I'd be putting it toward hiring someone more experienced.

Sigh.

In the meantime, the good news is that around this aggravation, I've managed to stay productive , although I have lost sleep trying to juggle things. And I have a cough, but it's getting better the more the smoke dissipates. It comes and goes, like many other things.

I thank Meredith for her assistance in this process as we find backup help. And Buddy, my cat, who ultimately would be the best solution for backup help if only he had opposable thumbs.

Saturday, June 27, 2009

Family caregiver contracts: a solution for some

The NY Times features an article about an arrangement some families are finding workable: when a son, daughter or other family member can be available for caregiving in the home, but can't afford to lose income, a caregiving contract can be drawn up between a parent who needs in-home care and that person.

Although the idea is somewhat new, it can make sense in a few ways, according to the article and elder law attorneys who were interviewed, since it is a legitimate way of providing in home care, while at the same time it allows the family member to continue to earn money for his or her own retirement.


Elder lawyers have been discussing care contracts or caregiver agreements for years, but interest has picked up since 2006, when Medicaid eligibility requirements tightened. As parents “spend down” their assets to qualify for Medicaid, which pays for most nursing home care, they face stiff penalties if they simply give family members money.

With a formal caregiving contract, however, elders can show that they were paying for services rendered, said Richard Kaplan, a University of Illinois law professor who has studied care contracts: “Money can be transferred to younger relatives without triggering a penalty.” Assuming, of course, that those relatives legitimately take on the task.

via newoldage.blogs.nytimes.com


Friday, June 26, 2009

Never Can Say Goodbye


I was working when the news broke about Michael Jackson's cardiac arrest and subsequent death yesterday. I remember Michael when he was very young and singing with the Jackson Five and when they had their TV show. But it's this song that I've always loved the most, one that was played over and over again in the quadrangles at Livingston College in Rutgers University. Livingston was an experiment in diversity back then, and the music that blared across campus was a mixture of folk, Motown, and rock. I spent a year there as an early admission prior to moving across the river to Rutgers College and never got over missing the music in the more sedate setting at Rutgers in New Brunswick.

RIP Michael.



[image description and credit: The photo above is of Livingston College in 1969 prior to its opening. Two male black students, a white female student and white administrator stand in the foreground, talking. Behind them are the dorms set in a quadrangle. A moving truck is shown toward the right as workmen unload mattresses. The photo comes from Rutgers Through the Years website at rutgers.edu and you can view a timeline here. ]

Thursday, June 25, 2009

Check out Winners on Wheels- WOW!

This video shows activities kids in wheelchairs can do through the group Winners on Wheels, also known as WOW. A parent discusses the changes she sees in her daughter after participating in WOW activities.


You can learn more about WOW at their Oregon WOW site here.

US Department of Labor offers monthly statistics on employment of individuals with a disability

via US Department of Labor site:

In June 2008, questions were added to the Current Population Survey (CPS) to identify persons with a disability in the civilian noninstitutional population age 16 and older. The addition of these questions allowed BLS to begin releasing monthly labor force data from the CPS for persons with a disability. The collection of these data is sponsored by the Department of Labor’s Office of Disability Employment Policy. Publication of CPS disability data began in February 2009 with the issuance of labor force data for January 2009. Explanatory materials are available on the frequently asked questions page. These materials provide information on comparisons with other data sources, variability of the data, and the types of data available. Additionally, links to historical data and alternate formats are located below.

You can view the statistics here.

Wednesday, June 24, 2009

Nick Jonas testifies before Senate hearing on federal funding for diabetes research

Nick talks about living with Type I diabetes since the age of 13, when he was diagnosed with diabetes, and how he wishes to be a positive face for the disease, showing children they can live their dreams while living with diabetes. On a personal note, one of my nephews has had Type I diabetes since he was a toddler. He, too, is living his dreams as are many others.

K Mart sued for disability discrimination for firing greeter who used cane

Press release- EEOC site:

KMART SUED FOR DISABILITY DISCRIMINATION FOR FIRING GREETER WHO USED CANE

Retail Giant Punished Worker for Back Impairment, EEOC Charges

NORFOLK, Va. – National retail giant Kmart Corporation violated federal law by firing an employee because of his disability, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed yesterday under the Americans With Disabilities Act (ADA) on behalf of a former worker who uses an assistive walking device.

The EEOC’s suit, filed in he U.S. District Court for the Eastern District of Virginia (Equal Employment Opportunity Commission v. Kmart Corporation, Civil Action No. 2:09CV291), asserted that around September 2004 Alonzo McGlone was hired as a greeter at a Kmart Super Center in Norfolk, Va. McGlone, who has a debilitating back impairment, uses a cane to assist him in walking and standing. The EEOC’s suit charged that McGlone was successfully performing his duties as a greeter when he was observed using his cane. According to the EEOC, McGlone was fired because of the use of his cane.

The EEOC filed suit after first attempting to reach a voluntary settlement out of court. The EEOC's lawsuit seeks reinstatement of McGlone into his former position or an equivalent one, as well as back pay, compensatory damages, and punitive damages. The EEOC also seeks an injunction ordering Kmart to institute and carry out policies, practices, and training programs which provide equal employment opportunities for persons with disabilities, and a work environment free from disability discrimination.

“Mr. McGlone lost his job because he needed to use an assistive device to walk,” said Herbert Brown, director of the EEOC’s Norfolk Local Office. “It is unfortunate that many employers still deny people who are ready and able the opportunity to work simply because of a disability. The EEOC will continue to fight for the rights of people victimized by such prejudices.”

During Fiscal Year 2008, disability discrimination charge filings with the EEOC nationwide rose to 19,453 -- an increase of 10 percent from the prior fiscal year and the highest level in 14 years.

Lynette A. Barnes, regional attorney for the EEOC’s Charlotte District Office, which includes the Norfolk Local Office, added, “This lawsuit is a reminder that, although we have made great strides in educating employers and the public about disability discrimination, some employers still judge applicants and employees based on a disability rather than on their proven ability to do a job.”

According to its web site, www.kmart.com, Kmart is a wholly owned subsidiary of Sears Holdings Corporation. As of January 31, 2009, Holdings operated a total of 1,368 Kmart stores across 49 states, Guam, Puerto Rico, and the U.S. Virgin Islands.

The EEOC enforces federal laws prohibiting employment discrimination. Further information about the EEOC is available on its web site at www.eeoc.gov.

Press release via site

Comings and goings

So it's the Year of Independent Living and what better time to discuss - independent living and hiring aides?

I've spent the better part of the last week training a new backup aide. This is difficult to do around my work, but obviously when a new person comes on board, he or she doesn't know where anything is, what to do and, to some extent, how to do it, depending on the person.

Yesterday the new aide arrived and told me she had family issues which might mean she has to give up the job. Of course what she doesn't understand is that she hasn't even begun. She's still at the point where she thinks the job is about cleaning, not about personal care but we're getting there. It takes time. One thing I've learned is you can't show a person more than one or two things at a time when there is a complex care situation.

Of course I am sympathetic to her personal situation and do want her to feel free to go do what she has to. However, because it's time consuming I am not going to continue training her until she lets me know her plans.

I've written before about the relationship between a personal care assistant and a person with a disability. It's a two way street that requires good communication. One of the things I've learned is that with a good aide, there's a flow which allows me to go live my life and get my work done, which is the point of the whole thing. This takes time and doesn't always work. But it is possible with a commitment by both people to a few simple rules:

1. Honor each other's time constraints. Be clear about what hours the person is working. The aide needs to show up on time and, on the other hand, know she can leave at the scheduled time so she can deal with her other commitments. Unilateral schedule-setting doesn't work and creates resentment. On the other hand , after months of working together, more flexibility can work out, but that takes time. It's a bad sign if you find yourself canceling social plans or dealing with work commitments because your aide changes the schedule without communicating first- or even acknowledging that you have a schedule yourself.

2. Listen to each other's needs and wants. It doesn't matter if you agree all of the time on every detail, but it does matter that you listen to each other. It's about respect and if that's present, things will work out - usually.

3. Treat the relationship as an investment. Both people are investing time and energy into the relationship. For example, it's never good to take a job as an aide if you can't make a commitment to it since the training is involved and time consuming. On the other hand , it's not good to hire someone about whom you have a lot of doubts to begin with. Move on and interview more people. When you find someone you can work with, chances are the feeling is mutual and there's a better chance your investment will pay off.

4. Keep in mind that aides receive low pay and have other commitments and employment as a general rule. Act accordingly. Do not expect them to drive over at a moment's notice except in the most dire of emergencies. Make arrangements with neighbors and others to deal with unexpected needs. Allow them time off. Remember the golden rule. Being an employer carries responsibilities. Try this for a reality check and insert the situation you're facing:

How would I like to (be called at 3 am to come over?)
(be asked to do things in an unreasonable way because your mother did it that way?)
(have to cancel social/work plans and stay home because my aide changed the time?)
(have things picked on, be rushed when it's not necessary, etc.?)
This can, of course, happen with behavior from aide to employer or from employer to aide, so it's a good exercise sometimes to do- together.

When the relationship with a personal care assistant and a person with a disability does get fine tuned and work, it's a beautiful thing. Most personal care assistants are dedicated individuals who, let's face it, don't do this job for the money. But do make sure they get paid on time. Remember that you're also an employer and you have responsibilities too.

Tuesday, June 23, 2009

Year of Community Living Announced by President

Yesterday on the anniversary of the Olmstead decision, the president announced "The Year of Community Living" which will include measures to assist Americans with disabilities.
The president said "I am proud to launch this initiative to reaffirm my Administration's commitment to vigorous enforcement of civil rights for Americans with disabilities and to ensuring the fullest inclusion of all people in the life of our nation."

Specifically, the President has directed Health and Human Services Secretary Kathleen Sebelius and Housing and Urban Development Secretary Shaun Donovan to work together to identify ways to improve access to housing, community supports, and independent living arrangements. As part of this effort, later today, Secretaries Sebelius and Donovan will announce several new initiatives including details about increased numbers of Section 8 vouchers and enhanced interagency coordination to address this critical civil rights issue. The initiative also will include listening sessions conducted by HHS across the country to hear the voices and stories of Americans and to keep the President's pledge to be as open and transparent as possible.

via JF Activist, White House Press Release

Sunday, June 21, 2009

Promise of lower costs for drugs for some Medicare recipients

The pharmaceutical industry promised to spend $80 billion toward "improving drug benefits for seniors on Medicare" yesterday.

....drug companies would pay half of the cost of brand-name drugs for seniors in the so-called doughnut hole — a gap in coverage that is a feature of many of the plans providing prescription coverage under Medicare. Other officials said wealthier Medicare beneficiaries would not receive the same break, but there was no mention of that in the statement.

In addition, the entire cost of the drug would count toward a patient's out-of-pocket costs, meaning their insurance coverage would cover more of their expenses than otherwise.
via msnbc.msn.com

RoughRoller.com : Rolling through rough terrain, through a desert?

The Rough Roller Off Road wheelchair device is shown in these videos on both manual and power chairs. The Rough Roller device is a large ball that is attached to the front of the wheelchair, lifting it off the ground.

Manual wheelchair in deep sand:



Power chair on rough terrain:

Saturday, June 20, 2009

Different Kinds of Privacy

Before I acquired my disability, I took certain kinds of privacy for granted. Those were the days before I had a personal care assistant, who comes into my home and assists me with preparing meals, personal care and other tasks. This involves a certain loss of privacy. I've been fortunate that my personal care assistant, Meredith, guards my privacy vis a vis others.

This isn't such an easy trait to find in a personal care assistant and, yet, it's one of the most important. It's uncomfortable, awkward and inappropriate to have personal information about your disability or life, which someone would not know unless he or she was doing personal care, treated carelessly by someone who doesn't have a boundary.

When I was interviewing my new backup aide Friday, I saw a sheet in the application packet that spelled out the expectations of personal care assistants. I pointed it out to the new aide and mentioned also that she would be privy to certain information I expected to be kept private. I believe this is a person who can and will do that with most information or I wouldn't hire her, but the reality is I never know until someone starts to work for me if that's true.

Some might think I'd be more concerned about privacy issues involving care with someone new, but the truth is that I'm well used to some loss of privacy in that regard. What I'll never get used to is running into someone in town who happens to know some intimate detail of my life that only a personal care assistant would know and finding myself dealing with a loss of privacy on a level few may understand when confronted by an acquaintance having access to that information.

This doesn't just apply to paid helpers, but others. Privacy issues arise with volunteers and friends in the same way. Whenever we are privy to information we otherwise wouldn't have while helping someone, it is best not to talk about that information.

One of my friends underwent a transplant operation and had people dropping off meals for her while she was recuperating. She stopped opening the door, she told me, because one woman gossiped to others about how her usually immaculate house was dirty. The gossip got back to her at a time when she wasn't able to afford cleaning help and certainly couldn't clean herself.

This may not be the same as having someone broadcast details of your personal care around, but it certainly shows how unhelpful- and thoughtless- it is to spread information about someone whose privacy is somewhat compromised. It's best to think about what information should be kept private before speaking to others.

A good rule of thumb is to ask yourself if you would want the same information broadcast about yourself if you were in that position.

Friday, June 19, 2009

Images of Disability and Beauty

This slide show by Enable Scotland portrays photos of people with disabilities, coupled with titles such as future occupations (award winning actress), relationship (loving aunt, apple of her eye), etc. It is entitled "Enable Beauty" on the site.

At the beginning, there is a quote that says : "Everything has its beauty, but not everyone can see it."

Thursday, June 18, 2009

Defending my life

I hate conversations, like I had yesterday, where I find myself defending my life as a person with quadriplegia. They usually include questions about how I "can stand" being unable to do so much, implying that what I can't do is what my life is comprised of.

And then this morning I was reading Bad Cripple, where Bill wrote about a conversation he had with a nurse about how decisions are made to end the lives of those with high spinal cord injuries, i.e. quadriplegics.

This is a bunch of nonsense. And, worse yet, these societal notions that some lives are not worth living still affect our health care, education and access to living in the community. As long as people with disabilities are classified into separate categories and deemed as having lives worth living - or not, depending on how disabled we are, we will continue to perpetuate the circular logic that such lives present no opportunity for quality of life.

Imagination is a cruel barometer in determining the fate of someone's life. Not being able to walk is something most people "can't imagine", they say. Having people feed or dress you must be mortifying, they add. And what about those bladder issues? Oh please. Let's grow up.

One of the reasons I played quad wheelchair tennis for years was because I wanted to maximize every bit of function I have. Make no mistake about the fact that most people work toward getting improvements in function and independence, if they survive the injury. I've seen so many people do better than doctors predict and do more than they are "supposed to do". In cases where the level stays the same, people adapt.

No one can convince me that those whose lives are ended out of the fear of others are better off not living. Using an able bodied standard to measure quality of life is ableism, plain and simple. It is rampant in a society that touts physical perfection and independence to a fault.

We need to take a good hard look at our core beliefs about the value and dignity of human life. I am tired of defending my life to others. I no longer list what I can do as if I have to prove that I have value. My life would have value even if I couldn't move anything but my nose - or even that. And don't think I'd necessarily learn to bowl with my nose either. Those days are over too.

I might, however, sneeze at anyone who said "If I were you, I'd kill myself."

Wednesday, June 17, 2009

Illinois allows online reporting of disability parking abuse

Those of us who use handicap placards and license plates legally to park know how many violators are out there. Now the State of Illinois is doing something about it. They have set up the Secretary of State's website to permit those seeing violations to report them.

via mariondaily.com:

People can now report able-bodied people parking in disability parking spaces or using disability placards without the disabled individual in the vehicle. People can make the report anonymously, but they must be able to report the license plate, disability placard, or disability plate number.

White also warns people never to confront the abuser.

To report abuse, go to www.cyberdriveillinois.com and on the home page click on the icon that says “Complaint Form Parking for Persons With Disabilities.”

Disability , negative medical attitudes and "near death" experiences

Terri tells her story How I DIDN'T Die about how the medical system responded when she had an accident and severed her spine.

She writes about how her family had to fight the medical system to get her the care she needed to survive while doctors told them she would have no quality of life.

It took my mom following one of the doctors around all day and to his car at the end of his shift to get him to open up and talk. She went into his office and grabbed a picture of his family and held it up to him and asked, “What would you do? Would you let them pull the plug on the one you loved without doing everything you could?”

My mom came back to my room and I remember seeing her cry for the first time. She held my hand, said a prayer, and promised me everything would be OK. She said she would fight to the end even if she had to tear the hospital apart.

The doctors came in the next morning earlier than usual and told us they were prepping me for surgery. My mom asked what kind. He said he couldn’t sleep the night before because of her and he was going to put me on a ventilator, which would breathe for me. When I got out of surgery they had a rotating bed waiting for me. The bed helped with weight shifts and shook — to help break up the stuff in my lungs.


Only then did she begin to improve and, eventually, survive her injuries.

She also writes:

A new Website and TV series is looking for first-person stories from patients, their families, loved ones, and doctors about how personal experiences have shaped what we believe about death and dying, and about the decisions we make for ourselves, for loved ones, or for patients at the end of life. The website is: http://how-we-die.org/HowWeDie

The series, tentatively titled “Stories,” is being developed by Marc N. Weiss, creator of the long-running PBS series P.O.V. and Tom Yellin, a veteran network news and public affairs producer. The series will explore experiences that tested or challenged their values and beliefs about who decides when and how we die, and what role, if any, government and healthcare institutions should play in those decisions. Visit the site and submit your story! http://how-we-die.org/HowWeDie


If any of you have stories to tell, please visit the above site.

h/t Not Dead Yet

Tuesday, June 16, 2009

Blending in

I once told my mother that I couldn't wear white knee socks to my Catholic grammar school because everyone else was wearing dark green ones. She asked me if there was a rule prohibiting the white socks and I said no. I was new at the school and at my old Catholic school everyone wore white, so that was what I owned. My mother told me that when the white socks wore out, she would buy me green ones, but there wasn't money to replace perfectly good socks.

I remember slamming my sock drawer and angrily telling my mother that she didn't understand how I felt. She never went to parochial school, I said. She didn't understand what a big deal knee socks were when they were one of the few items you could coordinate differently.

She smiled and asked me why the girls would choose to wear the same color as everyone else if they could accessorize their socks. Then she held up a pair of pink socks and smiled.

So the next day I wore pink socks with my plaid blue and green jumper to school. A few girls came up to me and said they wanted to wear different colors too but everyone wore green. One asked if I was going to wear a different color the next day and I said sure, that I was never going to wear green. She decided that she wasn't going to wear green any more either, because she was bored by it.

Within a week, the playground was full of girls wearing socks of all different colors and my white socks looked as if I was making a fashion statement. My only disappointment was that everyone forgot I started the trend.

I often remember those green socks after I've been out and about and I get a reaction to the way I do things differently due to my disability. I often answer questions with a sense of humor. To this day, there are people convinced that the assistive fork/knife I use is called a camping knife, for example. I tell them that it's a time saver because you don't have to wash both a fork and a knife. Impressed, many ask where I bought mine.

It's clearly an item we all need. It should be sold on TV.

I believe that my mom did me a huge favor by not buying me those socks.

Mark Selvaka on the Mound

Mark Selvaka, who has cerebral palsy, made the varsity Manchester high school baseball team this year as a pitcher. Pitching scoreless innings, he now wears Jim Abbott's number 25.



Mark's interview brought to mind these words:

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

Pres. Theodore Roosevelt
Paris, France
23 Apr 1910

Congratulations to Mark on making the team and his great season.

A transcript of this video can be found here.

Monday, June 15, 2009

What a burden: wrongful birth lawsuits

I was catching up on some blog posts from this weekend when I noticed a post over at Media dis&dat about Oregon parents who are suing over the cost of raising their child who has Down syndrome. They claim they would have aborted the baby had they known, but that tests failed to diagnose the condition and want $14 million.

The article states that there are fewer than ten such lawsuits a year, because of the awkward stance parents have to take in claiming that there was a wrongful birth and that the child is a burden. It also notes that some say, in order to preserve a right to damages from medical error, suing for "botched prenatal tests is no different than suing for botched knee surgery". The parents in this case are suing, among other things, for reimbursement from lost wages due to care issues as well as care for their daughter.

I am not going to comment directly on the couple involved in this lawsuit, but wish to discuss how our society responds to families with a member who has a disability. The reality is that there are a number of burdens involved here, but it's unfair to say that it's the child who is the burden.

Let's take a look at how our society fails to assist parents of children with disabilities. We offer prenatal testing and abortion, but we sure don't provide enough backup care or financial assistance.

The solution is not to have lawsuits where individual parents sue for 14 million dollars while a father has to sue Medicaid to provide diapers for his daughter - or faces having to institutionalize her .

Some disabilities are more expensive than others. This is a fact that has been swept under the carpet for years. We don't talk about it because we leave it up to individual families to somehow figure it all out, but as our country faces crises in health care, we need to address it swiftly and with a moral conscience. We also need to step up in our own communities to help each other. Government programs can't address every need these families face.

Those who value human life and believe in keeping families together need to consider questions such as these:

Are we going to continue to ignore the financial burden on families of having a child with a disability and therefore continue to label the child as a burden? What does that say about our belief that all human life is sacred?

When will we stop condoning the institutionalization of people with disabilities which separates family members and, although it is more expensive, has been part of our system for years? Does a child with a disability have less of a right to be part of a family out in the community?

When will we stop using a piecemeal approach to these issues through our legal and medical systems, resulting in large settlements for some and poverty for others?

How long can we continue to ignore our individual moral obligations toward families facing these issues in our communities? What can we do in our own parishes to assist these parents?

The important thing here is not to blame parents or the children, but to address their needs. That is our burden - together. Until we start doing that, we have no right to judge anyone.

Sunday, June 14, 2009

Cal Poly Launches Adaptive Kayak

via YouTube:

Bryan Gingg was the test pilot for an adaptive kayak developed for use by quadriplegic or paraplegic recreationalists. A Cal Poly alumnus who has been in a wheelchair for more than 20 years, Gingg was the first to sail a new high-tech kayak developed by Cal Poly kinesiology and engineering faculty and students. He used a mouth-held electronic "straw" to control the kayak.

In this video, the kayak is christened while a participant shouts " God bless Cal Poly!" Bryan is shown being transferred into the kayak via a lift. Once in the kayak, he independently navigates through the water via a sip and puff device. Afterwards, he is interviewed about his experience.



For an article about this program, click here.

Saturday, June 13, 2009

Book by Catholic family addresses family members' experiences with attempted suicide related to downsizing


After John Gallagher attempted suicide by jumping out of a hospital window, crushing his legs, his wife Patricia lied about his injuries to others saying it was an accident, including two of her children. The topic became like the "elephant in the living room".

It was only years later when her husband John decided to go public to help others after he read about a local teen who survived a nine story jump that the truth came out.

The family wrote a book called No More Secrets: A Family Speaks About Depression, Anxiety and Attempted Suicide," in which "each member of the family -- including Patricia's mother, Claire Mohan -- tells the story from his or her own perspective. The second half of the book offers advice and resources for families confronting similar problems."

John's attempted suicide came after he heard about pending downsizing at his job. Patricia believes the book can help many of those in the economic downturn facing similar problems.

The couple now speaks before various groups, including chapters of the National Alliance on Mental Illness, and wants to take their message to parish, workplace and community groups as well.

Contact information for the family can be found here.

Resources: Save: Suicide Awareness Voices of Education

National Suicide Prevention Lifeline 1-800-273-TALK

Suicide Facts

Study shows relationship between suicide and unemployment




[image description: The book cover is shown. The title No More Secrets is above a photo of the Gallagher family. Beneath that photo are the words A Family Speaks About Depression, Anxiety and Attempted Suicide. Underneath that is an image of a man in suit pants, white shirt and tie and suspenders jumping up joyfully in the air , his arms over his head and a briefcase in his right hand.The author's name John J. Gallagher is at the bottom.]

44% of housing discrimination complaints disability-related last year

Out of the record 10, 552 complaints filed for housing discrimination in 2008, 44% were due to disability-based discrimination.

via disability scoop:

The data, included in an annual report to Congress, includes housing discrimination complaints made directly to HUD and those made to state and local agencies that work with HUD. All complaints must specify one of seven reasons for discrimination including race, color, national origin, religion, sex, disability or familial status.

Disability Scoop provides the following information:

Those with concerns about housing discrimination can contact HUD at (800) 669-9777 or click here for more information.

Friday, June 12, 2009

When the word disability is used in quotes

BBC is running an article about a minke whale who was injured by a net at sea. He now has a deep laceration around his feeding pouch and has adapted his feeding technique in a way scientists have never recorded, rotating toward the right to feed and never the left due to the injury.

The scientist called it a "unique lunge-feeding behaviour."

Aside from ongoing concerns for the well being of these animals, the article is interesting to me because it is entitled "Net injury 'disables' minke whale" with the word disables in quotes, obviously because the animal has adapted a way to feed itself.

The reason I find this so interesting is because we apply the same thinking to people with disabilities. When the nature of the disability is such that someone can adapt and do an activity independently, even with technology, we ascribe a lesser degree of disability to them than when he or she continues to rely on human help and is unable to independently do that activity.

There is a hierarchy that exists regarding disability and this is one aspect of it, in my opinion. It is when the word disability is used in quotes.

Of course we sometimes forget that there are those who , if we took away their assistive technology would then be considered more disabled and many who if they had such technology would be considered less disabled.

With animals, it's understandable that such concerns are rarely addressed, although I've heard of vets rebuilding broken beaks on pelicans and such.

With humans, it's usually an issue of money.

Thursday, June 11, 2009

"I live in a crazy time"

said Anne Frank. And events from yesterday sadly reflect that we still do.

On the day a play about Anne Frank's life was planned at the U.S. Holocaust Memorial Museum, an 88 year old man tried to enter the museum . Special police officer Johns opened the door for the man, who opened fire on the officer. According to witnesses, he then shot at other security guards who fired back near the front of the museum. Visitors to the museum fled in the other direction, toward the "Remember the Children" exhibit, trying to find families and friends who came with them. Some visitors dropped and hit the floor. In the words of a witness:

"No one was standing up; no one dared move; we were all very scared. Finally, I ran back towards where my grandparents were to see if they were OK, and there we stayed until further instructions about how to exit the building safely."

They were told by guards to run and headed outside toward the lawn, some weeping. A security guard was killed. The shooter is hospitalized in critical condition.

*

The Southern Poverty Law Center, quoted yesterday as knowing about James von Brunn, the shooter in the U.S. Holocaust Memorial Museum , said he "has an extremely long history with neo-Nazis and white supremacists. He's written extremely incendiary publications, raging about Jews, blacks and the like."

The Center publishes a hate groups map on its site. They report that there were 926 active hate groups across the U.S. in 2008 which they counted. Their statistics do not include individuals, just groups.

*

The play to be performed, entitled Anne and Emmett, "is an imaginary conversation between Jewish girl Anne Frank, who wrote her famous diary about hiding from Nazi occupiers in Amsterdam, and Emmett Till, a black boy lynched in Mississippi in 1955", playwright Janet Langhart Cohen said.

Emmett Till was a 14 year old black boy who was killed in 1955 for flirting with a white woman in Mississippi. He was brutally murdered, his eye gouged out, shot in the head, beaten, and thrown into the Tallahatchie River with a 70 pound cotton gin fan tied to his neck with barbed wire. His body was found three days later in the river and police tried to convince people that the body was not his.

Anne Frank would have turned 80 years old tomorrow. Although we often talk about Anne Frank, the exact number of Jews systematically killed in the Holocaust has never been able to be determined, but is estimated at six millon. By 1945, 2 out of 3 European Jews were killed. Others also died.

As many as one-half million Gypsies, at least 250,000 mentally or physically disabled persons, and more than three million Soviet prisoners-of-war also fell victim to Nazi genocide. Jehovah’s Witnesses, homosexuals, Social Democrats, Communists, partisans, trade unionists, Polish intelligentsia and other undesirables were also victims of the hate and aggression carried out by the Nazis.

*

The museum remains closed today in honor of the slain security guard, with the flags at half mast. There is no doubt, according to witnesses, that the 39 year old security guard who was killed, Stephen Tyrone Jones, laid down his life to protect the visitors and fellow security guards. After telling the armed man to drop his weapon, the guards fired their weapons near the front of the museum. Jones, shown at left, worked at the museum for six years.


The President issued a statement:

"This outrageous act reminds us that we must remain vigilant against anti-Semitism and prejudice in all its forms. No American institution is more important to this effort than the Holocaust Museum, and no act of violence will diminish our determination to honor those who were lost by building a more peaceful and tolerant world."

The Anti-Defamation League said the shooting "reminds us in the starkest way where the spread of hatred can lead."

Occurring "at the very place that was created to remember and teach about evil in the world," the attack "is an immediate reminder that words of hate matter, that we can never afford to ignore hate because words of hate can easily become acts of hate, no matter the place, no matter the age of the hatemonger."

The Council on American-Islamic Relations condemned "this apparent bias-motivated attack" and said it stands "with the Jewish community and with Americans of all faiths in repudiating the kind of hatred and intolerance that can lead to such disturbing incidents."

Higher utility bills? You're not alone

At least on the East cost.

Thanks to the vagaries of Mother Nature this year, my friends and neighbors are being hit with unexpected higher utility costs. If you're on an equalization payment plan, these accrue and are due in June. Most seem to owe between 350 or more dollars than last year.

Funny thing is that when the bill came in, a friend told me that he thought he was the only one affected by it. (I had a heads up because Meredith got hers first). I was thinking about how often that's a reaction we have, but I bet if I took the time to go up and down my block I'd find a lot of others in the same boat.

One thing you can do is call the utility company and check to see if the bill is actual or estimated (i.e. whether a real meter reading was done.) If you can't find the code, call the billing department and have them help you locate it.

This comes at a really bad time for many people, so although I know it's off topic I wanted to share that bit of information.


A bit of blogging trivia - I somewhat broke the quote key on my laptop with my assistive device which I was using since my voice recognition wasn't working properly, so if you see posts with inconsistent quote marks or creative ones Ive invented , please dont assume Ive lost all the grammar the Sisters of St. Joseph drummed into me.

Wednesday, June 10, 2009

Arguing about - well , arguing

Having grown up with a father who worked as a labor negotiator, I learned the fine art of arguing at a young age over the dinner table. Never dreaming that he was grooming me to be an attorney, my father enjoyed verbally sparring with me. It taught me a lot about the difference between arguing for the sake of arguing and negotiating.

Often people seem more likely to argue over the smallest disputes rather than negotiate, which can be a waste of time for everyone. Taking a step back and looking at the whole picture can avoid a lot of this - unless, like in this Monty Python clip, you're looking for an argument.



Health care plans are just being presented in Washington. I hope all of us remember to differentiate between arguing and negotiating - because there's so much at stake here.

Monday, June 8, 2009

Support Information for Pregnant Mothers of Children with Disabilities

For information about perinatal hospices,

listed on www.perinatalhospice.org ."

Several other helpful and informative links from the article include the following:

via NCPD e-news

h/t NJCIM

Sunday, June 7, 2009

Weird sports weekend

You all know I'm a Phillies fan, but what's up with Brad Lidge? This post about whether Brad Lidge has made a deal with the devil has me thinking.

Not to mention this hat wielding fan who ran out onto the court during the French Open finals today. Congratulations, Roger Federer, on the Grand Slam win.


The Economic Downturn , Family Caregivers and Long Term Services

I ran across an article in the NY Times this morning about family caregivers and the effects of the economic downturn in those situations. Whether a person is caring for a senior, a child with a disability or other family member, the downturn hits these families particularly hard because they are trying to balance work and family based on the needs involved. Many have already sacrificed financially to do so , giving up full time jobs for part time work or walking away from the work force to meet their commitments.

In addition, government programs which supplement the help family members provide are facing cuts. Besides lost wages, there are also the out of pocket costs of being a caregiver, which average $5500 a year. (This would include travel expenses, such as gas and meals, hotels, purchasing care items, etc.)

The article discusses several situations facing families and raises quite a few issues that affect the debates we are having about our health care system, including long term care options. Under our present system, family members in their 50's who are caring for an aging parent, for example, and working fewer hours, then face the prospect of financial problems themselves when they become seniors. Because of their sacrifice, they have earned less and will receive a small monthly amount of Social Security benefits, with no retirement package a full time job offers. This will then put them in the same position, needing care without resources, perpetuating the problem.

Rather than cutting programs which provide supplemental help, we need to find ways to channel resources toward these families. As seniors live longer, it makes financial sense to make it easier for them to receive ongoing care, when it becomes necessary, in their homes. Those with disabilities who are advocating for the Community Choice Act (which would end the institutional bias of Medicaid funds) already realize, at a younger age, what issues face people when care is necessary. Our all -or-nothing approach of forcing people into nursing homes no longer works and is costing us too much. The option of using private care agencies with a family's income often exceeds the income a family caregiver can earn. We need to take a step back now and see the bigger picture with this issue.

When an individual requires assistance with meals, bathing and other activities of daily living, programs can be devised that are cost efficient, but only if we begin to face the reality that the need is only going to get greater as baby boomers age.

Saturday, June 6, 2009

Long Term Services and Support:: Congressional briefing and a video

from the JF Activist blog:

FOR IMMEDIATE RELEASE:

HELP COMMITTEE HOLDS CONGRESSIONAL BRIEFING ON HEALTH CARE REFORM AND LONG-TERM SERVICES AND SUPPORT

WASHINGTON, DC— Health, Education, Labor and Pensions (HELP) Chairman Edward M. Kennedy is committed to health reform that ensures vulnerable populations have access to coverage that meets their needs, including long-term services and support. On Monday, June 8, 2009 the Committee will host an open press Congressional briefing to provide an update on current HELP efforts to include long-term services and support in health reform.

Senator Tom Harkin (D-IA), a HELP Committee member and long-time advocate for individuals with disabilities, will be joined by senior Congressional staffers Connie Garner and Lee Perselay and Dr. Barbara Manard, from the American Association of Homes and Services for the Aging (AAHSA). Also participating: Mike Oxford of the Topeka Independent Living Resource Center and two-time Purple Heart Recipient and disabled Vietnam Veteran John Henry Douglas from Lake City, Florida.

WHO: Senator Tom Harkin (D-IA)

Connie Garner, Disability and Special Needs Population Policy Director for Senator Kennedy

Lee Perselay, Disability Counsel for Senator Harkin

Barbara Manard, Ph.D., Vice-President of Long-Term Care/Health Strategies for the American Association of Homes and Services for the Aging (AAHSA)

Mike Oxford, Executive Director of the Topeka Independent Living Resource Center

John Henry Douglas, Disabled Vietnam Veteran and recipient of two Purple Hearts, Lake City, FL

WHAT: Congressional briefing on long-term services and support

WHEN: 2:00pm Monday, June 8, 2009

WHERE: Russell Caucus Room (SR 325)


+


from Nick's Crusade:


Fighting For The Community Choice Act from Alejandra Ospina on Vimeo.

This, the Seventh Nick's Crusade Video Blog, is a music video/photo mashup of ADAPT protests for housing and the Community Choice Act. For more information, go to http://adapt.org


Immediate Empowerment

First a hat tip to Media dis&dat.

Imagine a device that allows deaf-blind people to instantly communicate with those around them. Sound like Star Trek?

Well, it's here. It's called the DeafBlind Communicator and it allows deaf-blind folks to make phone calls and engage in face to face communication. Washington state and HumanWare designed and manufactured it jointly, in a government -business cooperative effort that has resulted in immediate empowerment for those who have access to this technology.

How does it work?

For face-to-face conversations, the deaf-blind person hands the separate smaller device with a text display and keyboard to the person they want to communicate with.

A retractable tether is attached. With one click, the deaf- blind person who is operating the other half of the device sends the following opening message; "Hi, I’m blind and I can’t hear. To communicate with me, type a message on this keyboard and press (the return arrow)."

This message is both spoken through speakers and displayed on the text screen. The person who is deaf-blind can read the response via a display with Braille characters. Both parties can then communicate back and forth.

via Washington State Dept. of Social and Health Services site

People who were approached with the device "felt good" about the interaction and had no problem using it.

For those living in Washington state, the $8000 device is free or available on a sliding scale, with a cost reduction to $6000 due to the state's participation in designing the device. Free training is provided with the device.

For more information, go here to visit the Washington state site
or here to visit HumanWare.

Friday, June 5, 2009

"He's able bodied...."

I've seen this video before and thought I'd share it here since I'm short on time for blogging. It shows an able bodied man in a world designed for disabled people and is from "Talk" by the UK Disability Rights Commission.

Clip from "Talk" by the Disability Rights Commission (UK)

Thursday, June 4, 2009

Photos, old, new and those to come

Among the photos my mom recently gave me is a picture from my law school graduation.

I am standing in front of the Renaissance Building in Detroit in a black gown, looking ready to take on the world, my cap askew, my feet askance, my face adorned with a wide grin.

There are other photos. My Holy Communion day in a frilly white dress that I didn't want to wear, that covered bandaids from falling on roller skates. (I did like the white patent leather shoes, however.) My eighth grade graduation picture in a gold gown, standing with my grandmother. Baby pictures and a picture of me as a toddler in a plaid jumper suit holding my teddy bear.

"What was its name?" Meredith asked.

"Bear," I said. "Original, huh?"

"That's okay, mine was named Panda."

"Clearly we're both creative geniuses," I said.

We laughed. Then Meredith looked at me and said 'I've never seen pictures of you standing before."

There was silence for a moment. I realized that I don't think about standing - at least not literally- anymore. In older photos I am standing and now I sit in a wheelchair. It just reflects the way I move in the world - or moved in the world at that time.

Moving in the world is the important thing, as far as I'm concerned. And I have a great story about a shaker and a mover today.

Ben Berlin , a high school junior, is the first person on the autism spectrum to serve as a Congressional Page. He's also a member of JROTC and is an ambassador for People to People this summer, traveling through Europe.

He plans to attend college and possibly major in engineering. I look forward to seeing his graduation pictures.

[image description: 17 year old Ben is shown,dressed in a plaid jacket and a white T shirt, standing in front of the Shaker Heights Naval JROTC emblem, which is a gold eagle over a ship with the words encircling the image.}

Tuesday, June 2, 2009

Words that last a lifetime

Over at CNN, Bob Greene wrote an article on Sunday that touched my heart, about how the gracious words of a grocer during her childhood lasted in 80 year old Virginia Florey's memory for years. She and her friend Charlotte stopped into the grocery store every morning to buy a candy bar to split.

Charlotte and I would have a nickel, and we would buy a candy bar to split between us every morning. We would stand there in front of the man who owned the grocery and decide which kind to buy each day -- Butterfinger, or Milky Way, or Oh Henry!, or Hershey bar. We always talked about which one we wanted to spend our five cents on. We weren't very fast about it.

"And. . . ."

Here, Virginia Florey's voice grew almost wistful as she remembered it; here, almost 70 years later, you could hear the gratitude in her tone:

"He was never impatient with us. Never once."

Greene writes about the power of these words and memory, lasting despite all that happened over the years to Virginia. He calls them "small echoes of kindness" and posits that there are stories like that for many - words of encouragement, kindness or gentleness .

So I'm going to pause for a moment today and think about those moments in my own life, words that I recall when I need encouragement, kindness or gentleness in my life - gifts I've received from those who were spiritually generous.

Monday, June 1, 2009

It was a God thing

She was riding on the side of a four lane highway on her power chair. There wasn't really a shoulder at spots, allowing her a safe margin from the cars whizzing by, but my guess was she was heading somewhere important out of necessity.

I drove past her, then pulled into a parking lot driveway in front of her, honked my horn and lowered my window.

"Want a ride?," I asked.

"You bet," she said, as a car whizzed by, kicking a stone up that pinged off her chair.

So I let down the ramp and she rolled on. We had a nice chat about how we both have dodged becoming wheelchair pedestrian statistics. She told me she couldn't use her car any more now that she was in a power chair. The bus route was in the opposite direction of her destination and she said sometimes they passed her by or didn't lower the lift.

It turned out she was headed toward a nursing home. Her father is very ill and she hasn't been able to see him. It was miles down the road, so when I dropped her off there I told her I'd come back to take her home.

When she got home, she went down the ramp and turned to me.

"It's a miracle, isn't it, the way you came along?" she said.

I nodded.

She began to cry, but waved and kept rolling.

Yesterday I found out that my friend Stacey died of cancer. She was a good hearted soul and I'll miss her. Stacey was my aide for a short time. She always brought a smile and a hug. I know she was a spiritual person, because her actions told me so.

I can't say anything more about her right now. I'll miss running into her down here on Earth. But I do know she would have loved this story. She would have said "That was a God thing."