Sunday, May 31, 2009
"He was tenacious when it came to the idea that people with disabilities should be considered equal citizens and have opportunities to achieve the American dream," said Clyde Terry, CEO of Granite State Independent Living, where Robar worked since 1992.
A video about David is below.
David Robar, 44 years old, died of pneumonia.
Yesterday I tried out a ShopRite store a few towns over. The employees were courteous and friendly and very helpful. Because of their assistance in emptying it, I was able to use a basket to carry items. This is something I can't do if employees refuse to assist me. I'll definitely be back to shop there again.
I was listening to the family of a friend with a disability talk about access the other day. They were saying that when their daughter goes out, people learn that access isn't just about ramps. We all need to be mindful that the needs of all of those with disabilities are met, not just those in wheelchairs, for example. Customers who are deaf need a TTY line and blind customers need an accessible website and ATM machines they can use independently.
But in the end technology isn't going to fix everything. Our ability to be out and about and productive depends on others' attitudes toward providing access of other kinds, such as assistance in reaching items over our heads. Legislating this kind of help through the Americans with Disabilities Act hasn't solved the issue, in my opinion. The law is clear that customers should be accommodated, for example, if a business puts items too high or their aisles are too narrow to navigate. Nevertheless, when I request help, it's still hit and miss whether I'll get it.Far too often help is refused or requests are ignored. Sometimes I'm asked to wait so long for assistance that I have to get back to work myself and never get the help I request, so I leave the store. I can follow through on the ADA violation or go to another store to spend my money, but it doesn't solve the bottom line problem, which is yet another inconvenience to deal with, such as driving out of my way to find a store that offers this "other kind of access".
An ally who is nondisabled wrote on a blog that those with disabilities are social pioneers, meaning that we are breaking through barriers by going out and about. I believe this is true. I've created a map in my head of places where there is van access parking and stores and restaurants which offer assistance of all kinds. But the reality is that, like others, I'm always exploring new places and territories, where the landscape, in terms of accommodations, is unknown.
Once in a while, this leads to the discovery of new treasures, like I found yesterday. And I'm grateful to all those out there who have gone before me so that they are out there to be found.
Saturday, May 30, 2009
Friday, May 29, 2009
After the end of the war, the Philadelphia COs established a national foundation to further their aims. Included among their supporters were Eleanor Roosevelt, ACLU founder Roger Baldwin, actress Helen Hayes, and author Pearl Buck. From 1946 to 1950, their foundation published educational materials for attendants and the public, created a legal division to reform state commitment laws, and sponsored radio dramas broadcast nationally on CBS and NBC. Then, in 1950, faced by chronic financial problems and led by a board of directors lacking the passion and zeal of its founders, the foundation formed by the COs merged with two mainstream organizations to create a new mental health organization. Within a brief period of time, the new organization lost interest in institutional conditions and turned its attention to other matters. The institutions became out of sight, out of mind once more. The efforts of World War II COs to reform the nation's care of people with psychiatric and intellectual disabilities have since faded from professional and public memory.
Although Professor Taylor notes that current reform movements are led by those most directly affected, people with disabilities and their families, his article serves as a tribute to all of those who came from different walks of faith and gave valuable service to vulnerable Americans.
You can read the rest of the piece here.
As the first hospitals were built, often by religious groups, work was often done by volunteers and members of religious orders. They were traditionally non-profit and sponsored by a religious denomination and called almshouses, providing "only a minimum of charitable medical care". Later, large public hospitals were built in cities with research hospitals. Now many hospitals are funded by the government or compete as for-profit entities in the private sector. As much as the for-profit system has produced "some of the best hospitals in the world, a proportion of the populace may have little or no access to healthcare services of adequate quality".
Lousiana ,which built up a state-run charity-based model of care during the Depression years, stayed with it as the rest of the country changed. A microcosm of clashes between the old and the new way was highlighted in Louisiana after Katrina "blew the medically uninsured into the arms of the states' private hospitals, clinics and doctors" when two indigent-care hospitals were destroyed.
In a 2006 article, USA Today noted that :
In Louisiana, virtually all state-administered aid for the uninsured and indigent is channeled through 10 charity hospitals run by the Louisiana State University medical system. Most private hospitals are ineligible for this assistance, which came to about $1.1 billion in 2004.
This resulted in astronomical losses for the remaining private hospitals, who took on the toll of uninsured patients while those who closed temporarily fared better.
A comprehensive report by Pricewaterhouse was done to address healthcare delivery and the financing system in Louisiana hospitals. (link is to pdf file).
It found that Louisiana's two system hospital approach, one for the insured and the other for the uninsured or underinsured , was unworkable and didn't provide the best quality care for either sector, the private hospitals caring for the insured or the public hospitals caring for those who are uninsured or underinsured. The report found a shortage of general practitioners, nurses and physician's assistants, coupled with an abundance of specialists and medical students. The report also found that information technology was lacking.
Those who support continuing the Louisiana system decry these results and note the breakdown of the post-World War II system in hospital care on a national basis, stating that "LSU has never received the funding that it said it needed and has never been able to overcome the drag of the aging physical plant on its ability to attract a more economically diverse patient base," adding that
The fact remains that healthcare is in crisis across the country. As even industry comes to terms with the fact that this country will have to move to some form of a single-payer healthcare plan, that means that it will be the private, for-profit providers who will disappear. We are the only major industrialized country without a single-payer plan and the economic costs we bear because of that are not sustainable from a competitive standpoint.
Who can afford hospital beds that work like parked taxis with the meter left running?
Thursday, May 28, 2009
This movie is available through Netflix.
Via the Hoop Doctors.com
"Gina Marie was diagnosed with autism just before the age of 2. She could not even speak until she was 3 years old and now at age 7 she is singing National Anthems at professional sports games and concerts across the country. Her parents sent her to a school for kids with special needs as she had trouble forming words when attempting to speak. But her teachers at the school used music to help her with her language skills. I bet they had no idea what gift Gina had in store for them. "
Afterward, a few people told me, in a manner meant to enlighten me I suppose, that there is some resentment because I ask people to touch my shoulders instead of holding my hands, like "everyone else does". I've run into this attitude before.
It was like being back in high school for a moment, in the days where conformity ruled and making an individual decision led to being called on the carpet by a clique. I explained briefly that I ask people to touch my shoulders instead of holding hands to avoid injury due to the paralysis. I do this because of injuries I've received because people don't know how to handle paralyzed limbs. Although inadvertent, if someone lets go of my hand suddenly it can result in injury because my arm drops in a free fall. Nor can I feel when someone is squeezing too hard or pulls my arm in a direction that is causing pain and signaling a possible injury.
After numerous injuries over the years, I've learned that being self protective is necessary in a public setting where people come and go and don't understand what quadriplegia is. After all, people make assumptions and act out of a based "norm" of experiences. Although some seem to resent that I ask they touch my shoulders instead so that I avoid injury, most people can appreciate the fact that when I ask for things to be done differently, there's a reason.
Just as each and every person I encounter all day long has a response to my quadriplegia, they also have a response to the accommodations I need . I suppose it's inevitable that some will resent what they perceive as asking for special treatment and resort to using words like weird, even many years after high school.
I can live with that rather than risking more injuries. Praying for others really does lead to a lessening of resentments toward them, another thing I've learned because, as many of us know, everyone teaches us something if we are open to it.
Wednesday, May 27, 2009
We may think such a thing would never happen in the U.S., but the reality is that in our country, some disabled people aren't even out in the community, but in nursing homes.* Advocates who work toward community care and support the Community Choice Act know that the opposition to it is, in part, because the nursing home industry stands to lose the population of young disabled "patients" and the income derived from this group.
The human cost of dehumanizing treatment often gets lost in the equation when powerful groups with an upper hand in negotiations are given the right of way.
Wear a sign so those who are driving can see you. Live in an institution even though it costs more because it keeps the monies flowing and maintains the status quo.
Can you imagine the outcry if any other population receiving government funding had an institutional bias? What if someone decided that all children in government funded child care must be institutionalized 24/7? What if small business owners receiving government grants had to live in special housing? After all, they're taking government funds. This would seem like a gross exaggeration to many, but in effect, an institutional bias attached to government funds is only tolerated for those with disabilities. There is no reason that people with disabilities cannot live in the community with home care and be active participants.
Our society still has skewed values toward the disabled, many of which are being challenged by advocates. We provide IEP programs for students with disabilities, but our federal government has dismal employment figures for those same students after they get their education. We fail to build accessible homes for purchase, and continue to tolerate discrimination in rentals. Businesses still have to be sued to provide access inside, even national chains that can well afford to do so. Restaurants illegally bar those with guide dogs from entering. Airlines have refused to allow passengers with disabilities to board alone or at all. Advocates are working tirelessly to change these things on a daily basis, simply because waiting around for change has not worked.
Some people in our country, whether disabled or nondisabled, by virtue of circumstances, may already live in a world where they are privileged to have housing, employment and transportation, access to their community for material and spiritual needs. They may argue that Indonesia is far away and what happens there has no relevance to what takes place in our country. Some, in fact, even maintain that advocating isn't necessary. Of course, they already have the right of way.
But if you already have the right of way, I suggest that you pause and consider whether others who don't, who may not be as fortunate, deserve the same things you take for granted. Because what I see happening is that we are still handling disability issues and concerns through labeling and segregation rather than addressing the underlying problems.
And those who are most affected in our country have been without a voice at all.
*The nursing home industry argues that the bias for institutionalized care should remain in Medicaid. The reality is that the nursing home industry has a vested financial interest in maintaining the status quo.
His parents started The Gordie Foundation to raise awareness of the epidemic of alcohol abuse and hazing on campuses, as well as to educate students about the need to call for help to save lives. The foundation distributes materials to teach teenagers what symptoms can indicate a need for medical help. Statistics show that a student dies from alcohol abuse almost every five hours.
You can view the entire documentary below. The film includes testimony from educators, legal and medical authorities, as well as interviews with Gordie's friends and family. Haze also explains the social meaning that excessive binge drinking has for some students, as well as the need for parents to educate teens about its consequences. The film contains some graphic scenes of actual incidents of injuries from excessive drinking on campuses.
Tuesday, May 26, 2009
I've been watching the online discussion about Sotomayor's diabetes with some interest.I care whether she knows constitutional law (and, yes, that's been established). She has a long record as an attorney and a judge and brings a great deal of experience, intelligence and insight with her.
Newsweek just published an article entitled Stop Worrying About Sonia Sotomayor's Diabetes It quotes the Huffington Post, which wrote about the ongoing debate and queried "Just how relevant are medical issues to Sotomayor's or any other potential Supreme Court nomination?"
The Newsweek post goes on to say that:
While Sotomayor's condition may lead to complications that force her to retire after twenty years of hard work on the court, there's also the chance that if appointed, she could be hit by a bus on her second day and be forced to retire then. Or ten years from now, discoveries in stem-cell research could eliminate the more damaging health effects of diabetes...
and gave President Obama credit for looking at Judge Sotomayor's real qualifications.
I do, too.
Here's what matters to me, words that reflect a dedication to her calling:
I chose to be a lawyer, and ultimately a judge, because I find endless challenge in the complexities of the law.
16 years of court experience (she brings more court experience to the job than any other justice confirmed in the past 70 years)
balanced experience and a commitment to service: serving 5 years as a prosecutor and also on the board of "the Puerto Rican Legal Defense and Education Fund, the New York City Campaign Finance Board, and State of New York Mortgage Agency, where she helped provide mortgage insurance coverage to low-income housing and AIDS hospices"
She has upheld the ADA in disability work discrimination cases.
Judge Sotomayor has been a potential Supreme Court nominee for both Republican and Democratic presidents before.
You can see a biographical video here.
No one confirmed a back up arrangement (asked for ten days ago) for tomorrow mid day so my aide had to call and was told they were waiting to call me today since yesterday was a holiday. Was calling on Thursday or Friday not an option?
As a professional, I set up my schedule in advance so their decision to wait until today to let me know made it a nightmare to try to set up what I was doing.
A real nightmare. Lots of extra work and a real turn off.
Wonder why the unemployment rate is over 70% folks? Stuff like this.
Monday, May 25, 2009
via the site:
Have you ever had trouble reading the text on a computer screen? What about typing on a keyboard? For some people living with multiple sclerosis (MS), symptoms can make these everyday tasks difficult. However, there are technologies – designed with you in mind – to help you meet these challenges and help make your life with MS easier
MyMSMyWay is a free resource dedicated to connecting people with Multiple Sclerosis to accessible technologies that can help them live their lives better. This site is made for people with MS by people with MS. Our patient steering committee has guided our efforts to ensure that the information and resources provided on this site speak directly to the MS community.
Along with the steering committee, MyMSMyWay was developed by the MS Technology Collaborative, a landmark alliance of organizations passionate about helping people with multiple sclerosis (MS) maximize their abilities. The alliance brings together leaders from the pharmaceutical, technology, and patient advocacy sectors, including Bayer HealthCare Pharmaceuticals, a U.S. affiliate of Bayer Schering Pharma AG, Germany; Microsoft's Accessibility Business Unit; and the National Multiple Sclerosis Society. Each organization has a specialized understanding of the needs of people with MS.
You can read more about the companies involved, including Microsoft, National MS Society and Bayer Healthcare Pharmaceuticals here.
UPDATE: I received a link via email this morning to MS Views and News, which offers a blog, newsletter and many other resources
In this video David Kim tells the story behind starting the organization Children of Fallen Patriots, which helps take care of college expenses for children of those who die in the armed forces. He explains where the funding goes and how people can become involved.
If you'd like to help, please go here.
Sunday, May 24, 2009
CUSA Administrator, Fr. Lawrence Jagdfeld, O.F.M., shares his experience of what it is like to acquire a disability and how he learned to cope. For more information about CUSA, an Apostolate of Persons with Chronic Illness and/or Disability, visit www.cusan.org. or go directly here. I'm also adding CUSA to my blogroll as a resource.
Saturday, May 23, 2009
May God bless us with anger at injustice, oppression, and exploitation of people, so that we may work for justice, freedom and peace.
May God bless us with tears to shed for those who suffer from pain, rejection, starvation and war, so that we may reach out our hands to comfort them and turn their pain into joy.
And may God bless us with enough foolishness to believe that we can make a difference in this world, so that we can do what others claim cannot be done.
Friday, May 22, 2009
This article deals with many issues involved in health care reform as it affects those with disabilities and is a "must read" for all of us. Here's just an excerpt:
Right now, the main obstacle to LTSS reform is the bias in Medicaid long term care policy which reimburses states for costly and segregated institutional care but makes it extraordinary difficult to use the same money to support adults in the community instead. A person who uses a wheelchair or an adult with a developmental disability such as autism or Down Syndrome can get the government to pay for a costly institutional placement with low quality of life, but often must spend years on a waiting list for far less expensive services, such as attendant care that could keep them in their home or their family's. The abuses that take place within nursing homes and institutions are well documented and are truly shocking. This situation benefits nobody but lobbyists for the nursing home/institutions industry, which has been quite active in opposing reform on this issue.The Senate Finance Committee has recognized the need for some action on LTSS, but so far has only recommended limited reforms like increasing the federal Medicaid reimbursement for Home and Community Based Services by 1%. The real answer can be found in the Community Choice Act, which would add a benefit to Medicaid that would require states to allow people who meet an institutional level of care to instead control their own supports while choosing to live at home or with their families. President Obama won kudos from the disability community by supporting the Community Choice Act during his campaign, but since then the White House has signaled that this issue will not be considered as part of health care reform. The Community Choice Act should be properly considered a civil rights issue, as it means the difference between segregation or integration for millions of disabled citizens as well as many senior citizens for whom LTSS reform may be what keeps them out of a nursing home and living a life of dignity. Health care reform that fails to include this issue is health care reform that fails to meet the needs of over 50 million Americans with disabilities.
You can read the rest here.
The report found that sexual abuse was “endemic” in boys’ institutions, and throughout the system children were “frequently hungry” and “lived with the daily terror of not knowing where the next beating was coming from.” The investigation spanned incidents from the 1930s to the 1990s. Many of the institutions have since closed. The government has vowed to increase unannounced inspections of those still open.
The Wall Street Journal reports:
The Sisters of Mercy, one of the religious orders named in the report, offered an apology on its Web site to the people who "were hurt and damaged while in our care."
The report criticizes Ireland's Department of Education, which had legal responsibility for children in industrial and reformatory schools, for failing to stop the beatings and rapes. It says department officials were aware of abuse in schools, but the department's inspections were inadequate and it failed to exercise its "ample" legal powers, such as removing schools' managers.
This is beyond shameful. The descriptions of the systemic abuse turn one's stomach. Sadly, living in these conditions results in damage and hurt that can never be fully healed for the victims.
The report states that:
"Nevertheless, each instance of sexual abuse was treated in isolation and in secrecy by the authorities and there was no attempt to address the underlying systemic nature of the problem. There were no protocols or guidelines put in place that would have protected children from predatory behaviour. The management did not listen to or believe children when they complained of the activities of some of the men who had responsibility for their care. At best, the abusers were moved, but nothing was done about the harm done to the child. At worst, the child was blamed and seen as corrupted by the sexual activity, and was punished severely.
The Victim's Group has urged the Vatican to take action after the release of the report, including that the Vatican should "publicly rebuke the religious order that fought to keep abusers' names out of a damning report that details thousands of crimes against minors in Ireland."
There has been a call for a National Day of Repentance, according to the Irish Catholic newspaper, including a "a liturgy to be organised ''as an expression of sorrow to God for the clerical abuse of children''.
“In the yard, they gather the addicts in a circle to watch the ‘bad one’ get beaten. They hit him with clubs, shovels, fists, bars, belts, whatever they get their hands on,” the former patient stated.
According to him, Archpriest Peranović himself “knows how to hit, his hands are often bloody”.
“When he hits, using his arms and legs, his robe flies all over the place. He practices martial arts,” the man told Vreme.
The video below shows a young man being beaten with a shovel as he lays over a bench. A staff member then punches him around. The young man is then hit in the face with a staff member's fists while another staff member restrains him.
The rehab, which was originally blessed by Archbishop Peranovic of the Serbian Orothodox Church, has "spiraled out of control" and he "gave up on the center", the article claims.
Human rights monitor Sasa Jankovic plans to file charges against the rehab facility.
An investigaion by Serbian authorities continues.
Thursday, May 21, 2009
Sister Constance Walton talks with ABC affiliate, WXOW TV 19, about the Franciscan Sisters of Perpetual Adoration prayer request process. The sisters and their partners in prayer have been praying 24/7 since 1878. The news story was picked up by CNN headline news and aired across the globe. For more information, visit http://www.fspa.org/Prayer/index.html or go directly here.
At times in my life, I've been overwhelmed by the grace I've seen. There was the time when friends helped me build a ramp and renovated my kitchen. There's the low paid and difficult work my caregiver does for me. It can be humbling to receive rather than give, but what I began to appreciate is that grace is all around us all of the time and that none of us are merely givers or receivers, but capable of being both.
One of the things I've learned was how unaware I was of the grace in my life before my accident. Looking back, I realize that there had always been grace and I was the one who hadn't accepted it. I was under the illusion that I was independent and didn't need anyone. It wasn't until my own personal values changed, as well as my definition of what courage and maturity is, that I was able to embrace the reality of our interdependence on each other as human beings.
Now I realize that the choices I made surrounding grace had consequences because by not seeing the grace in my life, I remained cut off from the underlying truth that all of us play a role in extending God's grace. Sometimes we are recipients and sometimes we are the channels through which it flows. What matters is that we are open to experiencing grace.
Accepting grace, no matter where we are in the circle with our brothers and sisters, can become a way of life, where we are grateful for a beautiful day, the food we eat, and ways in which our interconnectedness enriches all of us spiritually. It is truly a gift from God to be able to set aside the fears and human pride that keeps us from being a part of a much bigger plan.
Wednesday, May 20, 2009
We were remembering a friend of ours with a disability, for example, who was being paid $23,000 a year at a job when the going salary was $40,000. We have other friends who work at jobs that pay considerably less and have for many years prior to the current economic situation, having to take part time employment due to employers' fears about having to take on the costs of accommodation. This is despite studies that show the actual average cost to be very low.
Of course, my friend noted, with the unemployment rate of people with disabilities so staggeringly high, many of them don't have jobs to lose. For those who do and rely on income to support their disabilities, loss of their job or even a cutback of hours may force them to turn to programs they never had to consider before. This is an important thing to keep in mind when dealing with the country's largest minority - approximately 20 per cent of Americans are disabled and many want to work.
Last to get hired, first to get fired, were the words my friend used. And no doubt this recession is hitting those with disabilities harder on the employment front*.
The reality is that, in many instances, services and even jobs for the disabled are getting cut first. For example, 3M cut outsourcing work for those with developmental disabilities at a sheltered workshop so they could save jobs at the plant for workers. And there is a ripple effect to that.
Any number of layoffs at the sheltered workshop would create a communitywide “ripple effect,” Young said. CMSE works closely with Columbia Public Schools, helping students with disabilities transition into adulthood and learning job skills. But the current waiting list for new employees already is 30 deep, and five or six of those are former workers who gained traditional jobs but were laid off when budget axes fell.
“Usually when the economy's bad like this, they're the first to get laid off,” he said.
Community and social service agencies — and taxpayers — will feel the pinch of providing day programs and increased funding for other services if the sheltered workshop is unable to maintain at least its current level of employment, Young said.
Those running the workshop were quick to point out that they didn't want to blame 3M, but it's also important to recognize that those who work in the field agree that those with disabilities are the "last to get hired, first to get fired" - and that this approach results in an increasing demand on other resources, turning those who managed to achieve a level of independence into those who are dependent. It is these areas we need to include in a dialogue for our country as we all try to heal from the current economic downturn.
*For example, only 21 percent of the available working disabled population is employed, compared with the 65 percent of nondisabled workers.
You can view the posters at the above link.
Tuesday, May 19, 2009
Rosebaugh made international headlines in 1977 when he was jailed in Brazil along with a Mennonite lay worker. The two had been living among the poor of Recife and helping street children by setting up an informal soup kitchen when they were arrested.
When they were released four days later, they complained of being held incommunicado, stripped naked and beaten. They handed a letter detailing their ordeal to U.S. first lady Rosalynn Carter, who was on a goodwill tour of Latin America covered by major U.S. media, and the exposure infuriated Brazil's military dictatorship. via USAToday.com
In one case, a New York school confined a 9-year-old with learning disabilities to a "small, dirty room" 75 times in six months for whistling, slouching and hand-waving. In another, a Florida teacher's aide gagged and duct-taped five misbehaving children to their desks; and police say a 14-year-old boy died when a special-education teacher in Texas lay on top of the student when he would not stay seated. Police ruled it a homicide, but a grand jury rejected criminal charges. via USAToday.com
Training is only required in seven out of the fifty states for use of these methods by teachers. No federal regulations are in place, including any requirement to report deaths ensuing from these practices, according to testimony by a GAO official, who has found at least 20 deaths have occurred.
Yet, in cases involving nonverbal children, parents often have no way to know what took place at school.
Bill East, executive director of the National Association of State Directors of Special Education, says the techniques, if used properly, "can and should be used" in a few instances, such as when a student is a threat to himself or others.
Congressional hearings are being held today after the Disability Rights Network, a Washington DC advocacy group, canvassed states and found instances of injury and death. In his opening remarks, Rep. Miller, who asked for the report stated:
"Recent news reports document appalling stories of teachers tying children to chairs, taping their mouths shut, using handcuffs, denying them food, fracturing bones, locking them in small dark spaces, and sitting on them until they turn blue.
One might start to wonder what could possibly cause a teacher or classroom aide to abuse a child this way. Well, we know what these children did: They fidgeted in their chairs or they were unwilling to follow directions."
Related: Restraint can dispirit and hurt special-ed students
GAO Report:Special needs kids abused in schools
Press release from Wisconsin about PBIS as alternative to restraint and seclusion
Video showing images of injuries to children and seclusion rooms used in various states.
Monday, May 18, 2009
Sunday, May 17, 2009
The Academy is raising money to make the school more accessible.
Saturday, May 16, 2009
You see, my lover makes no sound
His language is his hands
I watch his fingers dance
and try to understand
I try to understand
his elegant ballet
In my heart I can hear
the words he longs to say
And so I've learned to speak
a language he can hear
To tell him how I feel
whenever he his near
He lives around the block
it's just a little walk
We'll meet tonight at eight
At eight tonight, we'll talk
Oh my love, oh my love
Quiet love, quiet love
I am calm whenever you are near
And somehow I can hear
what your heart wants to say
I have a small surprise
To spring on you tonight
I'm learning how to sign
Please God I get it right
It's something that you do
With confidence and ease
I'm clumsier than you
This might come out Chinese
But come and fill my heart
Its never danced this way
I'm nervous and it's hard
I have so much to say
I've always been afraid
My dream seemed so unreal
But now I bless this world
For how you make me feel
Oh my love, oh my love
You are shy, so am I
But if you would tell me that it's true
You feel the way I do
Then tomorrow can start
For wise men always say
That in silence there's gold.
Friday, May 15, 2009
A new ebook device called the COOL-ER is being released in about two weeks with a much lower price than the Kindle. Although it lacks the ability to download books over the airwaves (using the drag/drop method on either a PC or a Mac), it does allow a reader to change font size, is a smaller size, comes in various colors (appealing to younger users) and employs a landscape mode. No text to speech mode, but with Random House yanking rights yesterday, not sure having that on the Kindle does anyone much good.
One other thing- the reviewer says the books cost more for this ebook reader than the Kindle books, but one good thing is that there isn't a waiting list anticipated.
Oh and did I mention it costs around $250?
Here's a walkthrough for my tech-y readers. Or go ahead and read the CrunchGear review.
Disability Rights Wisconsin files lawsuit regarding alleged withdrawal of treatment for developmentally disabled patients
Attorney Mitch Hagopian said he worried some UW Hospital doctors may be too quick to suggest withdrawing treatment from a developmentally disabled person they perceive to have a low quality of life.
The case involves the treatment of pneumonia in J.L., a 72 year old developmentally disabled man, where care was allegedly withheld and M.E. , a 13 year old boy, whose parents allegedly wanted care withheld. Neither patient was in a "persistent vegetative state". A prior state legal precedent regarding parents' rights to withhold care from children is flawed , Dr. Steven Leuthner, a bioethicist at the Medical College of Wisconsin, claims.
Leuthner, who is not a lawyer, said the group had reached a plausible interpretation of a 2002 case in which a state appellate court found that parents could not withhold care from children not in a vegetative state. But he faulted the judges in that case, who he said incorrectly interpreted a previous Supreme Court case, making for a troubling precedent. The decision also left parents powerless to act in their children’s best interests, he said.
“That would be my hope of what would come out of this, that (the courts) would recognize the problem in” the previous case, Leuthner said.
A spokesman from Bethesda Lutheran, who treated the 13 year old, administering antiobiotics after doctors at UW refused to give the order, stated that “We believe that the law in Wisconsin is clear that people with developmental disabilities should receive medical care for treatable illnesses unless they are dying or in a persistent vegetative state."
h/t Disability Scoop
The video below is of the song "I'll Try" written for the animated Peter Pan 2, with a nice monologue by the songwriter included. I know there are lots of people out there facing discouraging situations of different kinds and thought I'd share it.
Thursday, May 14, 2009
Now being a lobsterman also means having to deal with regulations, like those from whale advocates who want to reduce the number of traps a lobsterman can set. Lobster catchers are saying it's not the number of traps set that are the problem, but the rope that's used.
So why is this all reminding me of current discussions about long term care and health care reform? Whenever I hear proposed solutions, such as changes to the Medicaid Home Based and Community Care waivers, I keep thinking of people with disabilities I know who will get caught in traps or fall through the gaps of the parameters set. I'm concerned that those proposing these laws are too far removed from the actual experience of living with a disability - and trying to afford it- to understand that we don't want to be squeezed into programs we were trying to avoid in the first place by working.
As they discuss solutions to our future, it behooves members of the disability community to remember that we are going to have to live with the regulations that get put into effect. Some might be worrying about the number of lobster traps when they should be worried about rope. And, well meaning as all of this discussion might be, as long as we stay in the mindset of regulating what should be a civil right to live in the community, there will be people with disabilities who apparently have less rights than whales who get entangled in rope.
We need to make community, not institutionalized, care a reality with the Community Choice Act. It's more cost effective. But regulating it shouldn't be about setting up a complicated, convoluted system of qualification that will inevitably shut out people or- worse yet- force people into Medicaid. That's like laying rope that will entangle them. The real problems stem from issues like the high cost of equipment to stay mobile, equipment that is necessary to work but not available through programs designed for those who don't work. If we ignore factors like that, we are going to perpetuate the incentive to not work. If someone who works also pays into a program, is responsible for paying for expensive equipment on loans, then at what point does it break them financially? Ironically, this leads me to argue, even though I've always wanted to work and have worked, for legislation that simply acknowledges the high cost of equipment that isn't covered so you can work. This saddens me because I'd rather see the costs of living with a disability reduced so those of us with disabilities could work and pay for what we need, but we've created a system that has costs so high it's virtually impossible if you require both care and equipment.
I have grave concerns about every legislation I've read other than Senator Kennedy's proposed plan years ago, the CLASS Act of 2007 that would create an insurance program for people who become functionally disabled. It would provide a cash benefit to obtain services and supports so people could stay in the community, based on independence, choice and empowerment.
That's what many of us need - a predictable plan that would let us plan our finances in a way that acknowledges the extremely high cost of living with a disability. If we aren't going to get rid of those high costs in other ways (which it appears we are not), such a program could be expanded to cover those with disabilities (not just those who acquire disabilities, but those born with disabilities as well), and it would provide choices. Other proposed solutions have huge gaps.
Specifically, those pieces of equipment needed for mobility (i.e. wheelchair, accessible vehicle, guide dogs) are not being discussed as part of this equation. We must address these issues as part of this discussion because without mobility there is no work force among people with disabilities and we are back to a system that cares for us, rather than caring about our quality of life. If we can't get from Point A to Point B, we aren't going to have jobs.
Let's not rush toward legislation before we know what's entangling people here. The disability community is very diverse and the problems in forming such legislation are as well. I sincerely doubt that one solution will fit all. Take, for example, friends of mine with disabilities who are married to an able bodied spouse who need no care at home and may work part time but get insurance through their spouse. They don't see the problem at all - yet. Not until aging is an issue perhaps, or a spouse dies or something untoward happens. If they need a piece of equipment, the money is there to finance it. So they buy it. If their insurers deny a claim for a wheelchair, they finance it. They aren't even imagining that they will have to go on Medicaid to get care. So when they read about long term care and health care, it's not a huge concern to them. The same is true for those who live with their families.
It's a very different situation for a single person who does need care, even when he works. Are we going to continue with a system that makes it almost impossible to afford to work if you have a disability that requires care and equipment or are we out to make real change here? Because changes that just perpetuate the status quo for those in certain hierarchies of disability aren't solutions - or an improvement- at all.
Wednesday, May 13, 2009
The arresting officers didn't let him grab his cane, but rather accused him of faking blindness, then characterized his problems leaving the plane as "resisting." He was imprisoned overnight without being told of his charges, read his rights, or given access to counsel -- and he injured himself while there because he didn't have his cane. via BoingBoing
Police later said the blind passenger flunked a "blind test". The passenger's cane was lost in a scuffle with the police and he did not have it with him in prison, resulting in an injury.
After the plane sat on the tarmac for some time, passengers were told that the flight would be delayed - without explanation, according to Cantisani. They were unable to use phones, receive attendant service or move from their seats.
Cantisani claimed he was held in police custody at the airport from about 10 p.m. to 3 a.m. without food, water or access to his phone or outside communication. via prisonplanet.com
He was then taken to the 18th Police District, where he was kept until late the next evening, he says.
"I was never read my rights. I was put against the wall, told to put [my] hands on the wall, empty [my] pockets and undo my shoelaces," Cantisani said. "Then, I was shoved into a 6-by-7-foot cell and that was it."
Cantisani said that without his cane to help him navigate, he bumped his head, causing it to bleed.
Cantisani said no one believed he was blind until the end of his stay. via philly.com
National Call-In Day May 13:
Ensure Long-Term Services and Supports are Included in Health Care Reform
In coming weeks, the Senate will finalize legislation to reform America’s health care system. Long-term services and supports are essential to individuals with disabilities and seniors and must be included.
- While over 48 million Americans do not have medical insurance, over 250 million Americans lack any insurance protection for the costs of long-term services.
- Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.
- There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services.
- Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.
Proposals exist to help address these issues. However, they will only be included within health care reform legislation if Congress hears from you. Aging and disability organizations have joined together to host a national call-in day on Wednesday, May 13. Please join thousands of others across the country in calling your Senators to tell them how important it is to include long-term services and supports. Your calls can make a difference!
When: Wednesday, May 13 (Between 8AM and 6PM EDT)
Call-In Number: 1-866-459-9232 (Toll Free)
You will be asked which state you are calling from and will be connected to your Senators’ offices. Below is a sample script to leave a message.Hello (state your name and where you are calling from). I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.
via JF Activist
Tuesday, May 12, 2009
Thank you , FRIDA, for awarding this blog a Premio Dardos award.
The Prémio Dardos is given for recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing. These stamps were created with the intention of promoting fraternization between bloggers, a way of showing affection and gratitude for work that adds value to the Web.
It may be hard to understand that all of these people are living with Post Traumatic Stress Disorder (often called PTSD). What exactly is it, first of all? It's an anxiety disorder brought on after "exposure to a terrifying event or ordeal in which grave physical harm occurred or was threatened".
Symptoms may include persistent frightening thoughts and memories of the ordeal (flashbacks.e.g.), emotional numbness and/or feeling detached, sleep problems, hyper-alertness (i.e. easily startled), avoiding reminders of incident(s),feelings of guilt, depression, loss of interest in activities, memory loss of dangerous event(s) and angry outbursts. Some survivors are able to use treatment to move beyond PTSD with counseling.
Others who have suffered prolonged and repeated trauma must learn to cope with residual symptoms. Long term child abuse or torture survivors, for example, can experience changes in the way the brain works, making it more difficult to treat PTSD (sometimes referred to as complex PTSD). They can, however, be helped to live productively with the proper support.
In order to do that, however, we need to diagnose PTSD more effectively and make treatment available. The occurrence of PTSD in our veterans, for example, has been underreported and undertreated, resulting in high rates of homelessness,suicide, substance abuse issues and other problems. Untreated symptoms of PTSD cause many other problems. Yet, although one in five Iraq vets have PTSD, only half seek treatment. Some report fear of being stigmatized, while others are so caught up in their symptoms they have difficulty seeking help. Yesterday's shooting in Iraq of five soldiers by a soldier referred for treatment raises tragic questions about our reluctance to timely diagnose PTSD in a military where personnel sometimes serve three and four tours of duty.
Those who have survived child or domestic abuse also often live in silence with PTSD. They may not have access to treatment or realize that it's available, leading to lifelong relationship issues and job losses as adults. Children with untreated PTSD may do poorly in school and are unable to socialize with their peers, missing critical developmental milestones.
We need to learn to get beyond the stigma associated with naming disorders such as PTSD and offer treatment to those who need it in a timely, compassionate manner. That way perhaps we can help our brothers and sisters rather than label and blame them for having it.
Scott will go to train with a guide dog for 28 days after he finishes the American Idol tour in October.
Monday, May 11, 2009
So how ironic it is to find out that natural selection is favoring snails with slower metabolisms. A study, which was quite easily done apparently because a biologist said it was easy to recover the dead "because of their shells and because they did not move more than a couple of metres each year" , shows that the 'energetic definition of fitness" theory "predicts that animals that spend less energy will have more surplus for survival and reproduction,"
They found size did not predict which animals survived. But metabolic rate did, with surviving snails having a metabolic rate 20% lower than that of the snails that didn't survive. And the lower each snail's metabolic rate, the greater its chance of survival. That means that nature is selecting for snails that are more energy efficient, says Nespolo.
So check it out, my friends. Being more energy efficient is what counts in the long run. But still - they need to figure out if having a slow metabolism is linked to moving slowly. Which would be great to know, the next time someone gets mad at you if you're on a cane, crutches, wheels, etc. You could tell the irate person about the "energetic definition of fitness" and how natural selection favors lower metabolic rates.
So slow down.
I'm honored to be chosen by The Concord Pastor for the
Lemonade Stand Award
The best thing about this award is that there's no voting - bloggers just hand it on to others whom they qualify as bloggers "with great attitude and gratitude."
So, it's my turn to hand this on to others, and I nominate:
Coping with Disability and Disability Resource Links
Born Just Right
Life at Full Tilt
who in turn may nominate others!
Thanks to everyone!
Sunday, May 10, 2009
For the mothers of those with special needs.
For the mothers of those in our military .
For the mothers in our military and their children.
For mothers who learn from their kids.
For families without moms.
For mothers of a bride.
For the mothers of prisoners.
For mothers of twins and multiples.
For single mothers.
For those finding Mother's Day sad.
For our beloved nuns who serve mothers and their children every day.
For our lay female members who minister to our churches.
For mothers whose kids make them laugh.
For mothers who grieve the loss of a child.
For mothers of freshmen.
For mothers who are homeless and for those living in poverty.
For mothers in third world countries, dealing with malaria and other life threatening conditions.
For empty nest mothers.
For mothers of kids who make them proud.
For mothers of addicts and mothers who are addicts.
For all of us who celebrate Mother's Day in our own way.
And here's a video made for a special needs mom.
and a soldier surprises his mom with a homecoming
Happy Mother's Day!
Saturday, May 9, 2009
There are quite a few handicap parking spots at this Target, but just one or two that have van access. Fewer van access lanes are required, so not much to be done about that. If I get there when it's not crowded, I get a van access parking spot. Today that wasn't a problem.
But I said boldly for a reason, because there was another problem. There were a number of shopping carts and a store scooter in the hash marks, so I couldn't deploy my ramp. (I felt particularly betrayed by the scooter being left there for some reason, but it goes to show that there's an overall lack of awareness out there that some who use accessible vehicles can't physically remove scooters and shopping carts themselves.)
I tried to repark the van (within the blue lines) as far over as possible several times and finally was able to eke out enough room to get the ramp down and my chair down it. I went inside and asked them to clear the carts and scooter away.
By the time I came back out, I'm sure they had done that. There was, however, another shopping cart left right in front of where my ramp deploys.
Hey it wouldn't be boldly going if it was easy. But still it's much easier to deal with carts and other objects (even spacecraft) blocking a ramp when you're not in the van trying to get out.
While we're talking about boldly going, here's a great article on visitability in cohousing by Eleanor Smith. It's all about getting rid of those barriers.
As a wheelchair-using kid in the ‘50s, then as a house-hunting and friend-making adult in the ‘70s and ‘80s, very rarely could I go in anyone’s house except my own without a lot of planning, physical effort and social awkwardness to get up the entry steps. Once inside, I had to take care not to drink much liquid, since nearly all residential bathroom doors – including the tens of thousands being constructed at this moment – are too narrow for a wheelchair to pass through. These barriers made friendships harder to make, and also cut me off from some of the casual, vital information-sharing that goes on among people hanging out together.
Now, 10 years after that first formal meeting and 7 years after moving into the community, my visiting pattern has been transformed. The past few months have found me at Bob’s house playing Scrabble; at Lonnie’s delivering a meal when she came home from the hospital; at the Chen-Willoughby’s for a cello and piano concert; at Jenny and Jason’s for a committee meeting; at Anne’s for tea… These ordinary visits call to mind a saying some unknown disabled change-worker coined years ago: “To boldly go where everybody else has gone before.”
I'm now on Twitter and have an account on there that's open to blog readers. You can find and follow me at Rampracer .
Friday, May 8, 2009
Their site also offers some facts on children with disabilities:
* Up to 150 million children globally have a disability and the numbers are rising
* Children with disabilities are disproportionately likely to live in poverty
* 50% of children who are deaf and 60% of those with an intellectual impairment are sexually abused
* Parents and medical professionals who murder children with disabilities often have reduced sentences and use mercy killing defences – the lives of children with disabilities are not treated as of equal value with others
* In some countries 90% of children with disabilities will not survive beyond the age of 20
* 98% of children with disabilities across the developing world have no access to education
* Discrimination in relation to life saving treatments, to health care, to child care services and education is endemic
* Access to justice is routinely denied because they are not considered credible witnesses
[Source: Draft version of 'Promoting the Rights of Children with Disabilities: A guide to using the Convention on the Rights of Persons with Disabilities with the Convention on the Rights of the Child,' produced on behalf of the Save the Children Alliance by Sweden and the UK]
The article states that 70 percent of homeless people have mental illnesses.
Witnesses to Hunger, a group of homeless women who were given digital cameras to photograph their lives, traveled to Washington DC this week. They worked with Drexel University's School of Public Health to create the project and were followed by a documentary crew. The exhibit was displayed at the Russell Senate Office Building. A video of the project is below.
Since The Inquirer published a story about their photos last fall, news organizations in Asia, the Middle East and Europe have written about the women and the North Philadelphia world they photographed.
Leaving the hospital, I saw posters and charts affixed to the walls with the same bandage tape from Orisseyhou’s hand, and it reminded me that the people I had met were more than victims. Maybe they were ready to fight back.
That is the Africa I hope to find.
Dakar is a city in Senegal, where in 2007 a historic election took place. Its music, particularly hip hop, is of a political nature, as shown in the documentary film Democracy in Dakar. You can find the documentary on YouTube to watch, and I've put the first part below. For recent election news, go here.
"The film follows rappers, DJs, journalists, professors and people on the street at the time before during and after the controversial 2007 presidential election in Senegal and examines hip-hop's role on the political process. Originally shot as a seven part documentary mini-series released via the internet - the documentary bridges the gap between hip-hop activism, video journalism and documentary film and explores the role of youth and musical activism on the political process."
Related: Sengalese press: oppressed or out of control?
Senegal avoids human rights trial
Sudan opens up to more aid groups
A continent revealed
Thursday, May 7, 2009
I spend the majority of my work time focused on others' problems. I cherish whatever free time I can muster out of life, but have always been equally content to spend it with friends or in solitude. This surprises some people, although I'm not sure why. I don't understand the bad rap solitude gets because I find it quite rich spiritually and, although too much of it can be a bad thing, too little of it is much worse in my experience.
I wasted a number of precious hours this week on disability-related care issues and routine medical care issues that were poorly handled. So there was little to no progress. I finally realized that the only way for me to get through this is to use this time for solitude, silence and private, despite the fact that externally I may have none of the three.
This is not an easy feat when you're surrounded by screaming children - or even adults- and forms, rules, prodding, poking , and the like. It is, however, a real test of whether my ability to meditate is true and that's a challenge I'll take.
I can report back that although no progress at all was made with any of the outward concerns regarding care, that I had a wonderful time meditating in the midst of it all. Therefore, I'm not starved for meditation -or friendship -right now.
In fact, next to God, I believe I've finally learned how to be my own best friend.