Not Dead Yet News & Commentary: Calif. - Ed Roberts Day Declared - his impact on disability rights and his relationship to NDY issues

There are many news sources for this, but here's the news from UCBerkeley News giving a short account of the life of Ed Roberts and the legislative action that created an "Ed Roberts Day."  Here are the first two paragraphs from Wendy Edelstein's "Ed Roberts, disability-rights leader and Cal alum, gets his own state day":

January 23 has been named Ed Roberts Day in California, in honor of the Cal alum who pioneered the disability-rights movement on campus and nationwide.

Roberts, who was the first Berkeley student to rely on a wheelchair when he arrived in 1962, is recognized as the father of the independent living movement for people with disabilities and special needs. He died in 1995.

Remember January 23-Ed Roberts Day

Monitoring Elderly Parents - NYTimes.com

In the general scheme of life, parents are the ones who keep tabs on the children. But now, a raft of new technology is making it possible for adult children to monitor to a stunningly precise degree the daily movements and habits of their aging parents.

The purpose is to provide enough supervision to make it possible for elderly people to stay in their homes rather than move to an assisted-living facility or nursing home — a goal almost universally embraced as both emotionally and financially desirable. With that in mind, a vast spectrum of companies, from giants like General Electric to start-ups like iReminder of Westfield, N.J., which has developed a system to notify families if loved ones haven’t taken their medicine, are looking for a piece of the market of families with an aging relative.

Many of the systems are godsends for families. But, as with any parent-child relationship, all loving intentions can be tempered by issues of control, role-reversal, guilt and a little deception — enough loaded stuff to fill a psychology syllabus. For just as the current population of adults in their 30s and 40s have built a reputation for being a generation of hyper-involved, hovering parents to their own children, they now have the tools to micro-manage their aging mothers and fathers as well.

A Personal Review of “The Age of the Infovore” http://amzn.to/cpXbYX

“The Age of the Infovore” is economist Tyler Cowen’s personal panegyric to the cognitive abilities of people on the autism spectrum, and their critical importance in an age of endlessly flowing and incoherent information. He discovered his place on the autism spectrum when an adult with autism suggested the possibility. He has embraced his neurodiversity and explored it’s possibilities and the contributions that people who are neurodiverse make to our society.

The central cognitive dimension that Cowen examines is the drive to create order that characterises many neurodiverse people. This drive allows such individuals to focus  on a single arena of the world, and to bring a depth and scope of understanding to that arena that neurotypical people find very difficult. Sometimes the focus seems out of step with the larger society, and sometimes it seems prescient. In any event, it is driven by the internal experience of the person, and the activity brings great meaning to that person, and can do so to others (see how much of our entertainment focuses on collections).

I know in my heart what Tyler Cowen means.

I learned to read at the age of four and got my library card at the age of 6. From that first discovery of an infinite world of knowledge, I relentlessly tried to learn everything. I read whenever I wasn’t asleep, and when I wouldn’t be punished for it. I read everything regardless of topic. I often carried 2 or 3 books with me as I moved through my world. I won an award at a Catholic elementary school for a poem I wrote that praised science as the ultimate source of knowledge.

I was hooked.

I didn’t find my personal focus until, after 21 months in Vietnam, I came to work in a medical clinic in 1970 that supported families with children who had significant brain damage and other characteristics, including autism. I latched on to the idea that I needed to understand change, and most especially intentional change, and I have pursued that understanding for the 40 years since.

Whether my particular obsession will result in anything generally useful remains to be seen. I have used what I learned in my work in human services and rights advocacy to the good of myself and others.

I want to thank Tyler Cowen for bringing dignity to what has always seemed to me a peculiar personal trait, and for his offering of a larger community to all of us with that drive for order. I think the book will have a wide audience of appreciation, but most of all to those who always felt outside the community of the normal, and wondered what good it was to be different.

Tyler Cowen also has a great blog called “Marginal Revolution”.

One Way to Judge a Nursing Home - The New Old Age Blog - NYTimes.com http://nyti.ms/9MUkZc

Chang W. Lee/The New York Times A certified nursing assistant helping an Alzheimer’s patient at a nursing home in New York.

While looking at nursing homes for my mother, I always asked the tour guides if I could talk to the nurses’ aides. This seemed to me a logical request. After all, these were the women — and they were all women — who would spend the most time with my mother, who would notice small changes that raised big questions, who would make her feel cared for. Or not.

“They don’t do that,” I was told almost everywhere I visited.

I soon realized why. In casual conversations in hallways and dining rooms at more than a dozen facilities, I found only one nurses’ aide who been on the job more than six months. I was witnessing in real life one of the most dismal statistics in long-term care: More than 70 percent of nurses’ aides, or certified nursing assistants, change jobs in a given year.

Then came the tour guide who didn’t say no. “No one has ever asked that before, but why not?” the marketing director of a New Jersey nursing home said in response to my request. He said he would ask three aides then on break if they wanted to talk to me. They said yes.

I asked how long they had worked there. One said 12 years; another, 8. The third answered: “I’m the baby. I’ve been here four years.”

I decided this was the place for my mother. These women used the word “we” when talking about the nursing home, making clear that they felt a sense of ownership. And it seemed significant that the marketing director asked their permission before allowing me to impose on their break time. Moreover, he trusted them enough to leave me alone with them in the break room.

That was 10 years ago. I do not know exactly what I would find today, but the overall situation has not changed. The reasons for the high turnover rate among nurses’ aides are the same as they were then: low wages ($10.48 an hour on average), poor benefits, high injury rates and lack of respect on the job.

What has changed is that the industry, the federal government and the states have all identified the turnover rate as a crisis in long-term care, particularly with demand poised to soar as the baby boom generation ages. Researchers have found that high turnover in a facility corresponds with poor quality of care — more bedsores and more use of restraints, catheters and mood-altering drugs. That is, more reliance on medicine and technology, less on relationships.

“Cycling in aides who don’t know you is very disorienting and upsetting, and the resident is the one who suffers on the quality end,” said Peggy Powell, a senior staffer at PHI, formerly known as  the Paraprofessional Healthcare Institute, a nonprofit group focused on improving the front-line work force in long-term care.

In nursing homes with high turnover rates, certified nursing assistants tend to leave within three months, often because of inadequate training and support to juggle multiple frail, ailing residents at a time, according to Robyn Stone,  senior vice president for research at the American Association of Homes and Services for the Aging. Once aides leave, everyone else must pick up their caseloads, and the stress of the job rises.

Culture change initiatives are under way in nursing homes around the country to make aides’ jobs more fulfilling — not so much through better pay, but by offering better training, more responsibility and more respect from superiors. The aides at my mother’s nursing home had all this, plus health and pension benefits.

Ericka Dickens had been there for nine years when she became my mother’s aide. She had the patience and experience to navigate my mother’s stormy moods as her dementia worsened, to notice immediately when she was feeling weak or sick. Sometimes I would arrive in the early morning to find Ms. Dickens sitting beside my mother, holding her hand and talking to her.

I hadn’t seen Ms. Dickens since shortly after my mother died six years ago. Recently I called to see if she still worked at the nursing home. I discovered that she is now in her 20th year, currently assigned to the physical therapy department. I visited her there and found her assisting a resident who looked up at her at one point and said: “Oh, Ericka, you look so good. You always look so good. You’re a good friend.”

I asked what made her want to stay in the job all these years. She said she always felt respected and supported, but the anchor for her and others is the bond with residents. (There were five other aides from my mother’s era on the afternoon shift that day, including one who had been there for 25 years.)

“We have reminiscences about this person and that person, how we used to love this one and how we used to love that one,” Ms. Dickens said. “They become your family. A few weeks ago, someone passed away, and Winnie and I went to the wake. Her daughter was so happy when she saw us, she started crying. And you feel: ‘Yes, I did something. I’m part of something.’ It’s really fulfilling.”

Duh!!

Americans with Disabilities Act hits 20 today | freep.com | Detroit Free Press

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Marva Ways remembers peering longingly through restaurant windows at the diners enjoying their meals.

All too often, she was unable to join them because her wheelchair couldn't fit through the door or maneuver up the stairs.

Today, the 60-year-old Dearborn Heights woman and millions of others who have benefited will be celebrating the 20th anniversary of the passage of the Americans with Disabilities Act.

The legislation made everything from sign-language interpreters at speeches to public restroom grab bars to anti-discrimination hiring policies possible.

"Before the ADA was passed, it was almost like people with disabilities had no civil rights," Ways said. "A lot of it had to do with attitudinal barriers."

Fifteen percent, or 41.3 million, of (noninstitutionalized) Americans have disabilities, according to the most recent American Community Service data from the U.S. Census.

Paralyzed in a 1976 car accident, Ways told the Free Press she often had to deal with inaccessibility issues when she began traveling the country as a disability-rights advocate.

"People didn't recognize us as the first-class citizens that we were," said Ways, a professional motivational speaker who was the first runner-up in the 2005 Ms. Wheelchair America contest.

In disability civil rights, Michigan considered leader

Michigan was among the first states in the country to have laws protecting disabled people, and in some areas is stricter than the Americans with Disabilities Act, according to the head of Wayne State University's disability law clinic.

"Michigan was an early leader in the field of disability civil rights," said professor David Moss, who teaches discrimination law.

In 1976, the state enacted what was called the Michigan Handicappers' Civil Rights Act to require accessibility and outlaw discrimination.

Under federal law, only businesses that have more than a certain number of employees are bound by the ADA. But Michigan's stricter law applies to companies that have only one employee.

Hip Hip Hooray for the ADA! Happy 20th birthday!

VICTORY: Journalist Bob Whitaker is "Re-Confirmed" as Keynote for Alternatives 2010 — MFI Portal

VICTORY: Journalist Bob Whitaker is "Re-Confirmed" as Keynote for Alternatives 2010

— filed under:

Whitaker is a critic of psychiatric drug company claims, with his new book, "Anatomy of an Epidemic." US federal government officials objected to Whitaker keynoting Alternatives 2010 conference. An MFI alert 48-hours ago is called "effective," and Whitaker is now re-confirmed as keynoter. Thank you MFI News readers!

VICTORY: Journalist Bob Whitaker is "Re-Confirmed" as Keynote for Alternatives 2010

Bob Whitaker is author of the new book, "Anatomy of an Epidemic," critical of the psychiatric drug industry.

 More info:


23 July 2010

 

What a difference two days and a MindFreedom International alert can make?

 

What a difference a MOVEMENT can make!

 

by David W. Oaks, Director, MindFreedom International

While there's no guarantee public attention helped, there has been a sudden change today:

This morning, author Robert B. Whitaker has been "re-confirmed" as keynote speaker at the annual federally-funded Alternatives 2010, which has brought together hundreds of mental health consumers and psychiatric survivors for 25 years. His new "Anatomy of an Epidemic" has significant criticisms of claims by the psychiatric pharmaceutical industry.

Bob told MindFreedom, "It does go to the sense that this is a consumer/survivor conference. They can set the agenda. That's the way it should be, in terms of self-empowerment. They should choose who they want to hear from. It's a nice step forward."

Congratulations everyone -- especially those who do good work in the "system-funded" world and have the courage to invite a critic of the dominant paradigm.  We know your job is tough, and we appreciate your effort.

For a copy of Rockville Bastille 2010 statement about psychiatric pharmaceutical industry undue influence, click here.

At the same time, this is a great teaching moment in the importance of supporting and remembering the independent psychiatric survivor activist movement, including MindFreedom International.

Below this brief timeline of recent events is how YOU can thank the Obama administration, and encourage more support for deep change in mental health care.

TIMELINE:

 

  • June 2010: Robert Whitaker is confirmed as keynote speaker of Alternatives 2010.
  • 15 July: His confirmation is withdrawn by organizers, citing concerns by high-level federal officials. Bob was told he was not going to keynote.
  • 21 July: MindFreedom issued a public alert, "What About Bob?" copied BELOW. Many of you quickly responded by contacting President Obama and SAMHSA (I'll post some on the MFI blog). A SAMHSA phone operator could guess the topic before a caller even said it!
  • 23 July: Today, Whitaker is re-confirmed as keynoter of Alternatives 2010. An anonymous source said the MindFreedom alert was "effective."


~~~~~~~~~~

*** NEW ACTIONS *** NEW ACTIONS *** NEW ACTIONS ***

 

1) THANKS!


Too often, activists are seen as complainers. Here's a chance to give some APPRECIATION.

Please use the White House web form here to send THANKS, and encouragement for more:
   
    http://www.whitehouse.gov/contact/

SAMPLE MESSAGE -- please limit yours to 2,500 characters. Your own words are best:

THANK YOU President Obama for your administration support today for the self-determination of mental health consumers/psychiatric survivors to choose journalist Bob Whitaker, author of Anatomy of an Epidemic, to keynote Alternatives 2010, which is an important annual conference funded by SAMHSA. Now it's time to do even more. We encourage you and your staff to support the availability of more non-drug, effective, empowering choices in mental health care.

If possible, please copy your thank you message by e-mail to SAMHSA director Pam Hyde at Pam.Hyde@SAMHSA.hhs.gov, and to MFI for public use at news (at) mindfreedom (dot) org

2) FORWARD THIS GOOD NEWS!


Many blogs, Facebook pages, e-mail lists, etc. are talking about the MFI alert from two days ago. Please spread this good news.

3) READ BOB'S BOOK!


You can order Whitaker's book "Anatomy of an Epidemic" at discount from MindFreedom's MAD MARKET, and benefit MFI's human rights work:

http://www.madmarket.org

MindFreedom will also have an exhibit booth at Alternatives 2010 with Bob's book, see you there!

4) JOIN AND SUPPORT MINDFREEDOM INTERNATIONAL!


Here's a great lesson in inside-outside strategy. That relies on MindFreedom independence. Donate to MFI today:

    http://www.mindfreedom.org/join-donate

~~~~~~~~~~

FOR COPY OF ORIGINAL "EFFECTIVE" ALERT -- NOW COMPLETED -- click here.
 

 

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Everything you need to know about the internet | Technology | The Observer http://bit.ly/bthVtA

MUCH more good stuff in the essay through the link:

Many years ago, the cultural critic Neil Postman, one of the 20th century's most perceptive critics of technology, predicted that the insights of two writers would, like a pair of bookends, bracket our future. Aldous Huxley believed that we would be destroyed by the things we love, while George Orwell thought we would be destroyed by the things we fear....

On the one (Huxleyan) hand, the net has been a profoundly liberating influence in our lives....to the point where it has acquired quasi-addictive power, especially over younger generations....

On the other (Orwellian) hand, the internet is the nearest thing to a perfect surveillance machine the world has ever seen. Everything you do on the net is logged – every email you send, every website you visit, every file you download, every search you conduct is recorded and filed somewhere.... 
http://bit.ly/bthVtA

Norman DeLisle


ndelisle@prosynergy.org
http://www.copower.org
Follow the Path of Feistiness and Non-Compliance

Blogs:
  normdelisle.posterous.com
  recoverymi.posterous.com
  ltcreform.posterous.com


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Doing presentation on social networking as a tool for advocacy/recovery at Burton Manor http://bit.ly/cyTlhi

I'm doing a presentation at the 5th Annual Empowerment Day on using social networking as a tool for advocacy and recovery. The conference is at the Burton Manor, at 27777 Schoolcraft Road
Livonia, MI 48150-2219 from 8 am to 3 pm. tomorrow June 11.

If you can't make it, you can download the presentation from Slideshare at http://www.slideshare.net/ndelisle/social-networking-4466581