Christmas Tales from the Disability World

I have no new thoughts on Christmas. But while the huband and kids are out doing last minute holiday errands (taking chairs and disposable party tableware to relatives) I wanted to share some excellent disability Christmas carols and Christmas tales from some of BBC message board's most illustrious disability bloggers.

The Real Meaning of Christmas..

There is a compliation CD that has a song entitled, "The Real Meaning of Christmas". I heard it this morning and it was a nice reminder as we finish up the last minute shopping, holiday eating, festivities and post Christmas Boxing Day, that we should take a few minutes to rest, reflect and be greatful for all we have. We forget and overlook our many blessings--so, give someone a call, send one of those sloppy sentimental email cards and practice random acts of kindness.

Peace

Don't Mess with Me-- I have a 504 Plan!

I have created a Teenage Advocacy Monster!

He prowls the hall of a public school, that shall not be named:

1. seeking lairs to use for private test taking
2. bouncing other kids from the library study carrels
3. running teachers from unofficial break areas

He marks his territory:

1. setting up time to use the computer lab for his test modification that can be administered
2. setting up time after school or during study halls to have his extended time test modification

He stalks him prey:

1. commanding the Building Specialist (code language for Special Education Teacher) to get get him out of class based tests
2. ratting out teacher non compliance to the Building Coordinator of Special Education
3. demanding his test modifications from teachers
4. reminding teachers about his test modifications
5. demanding again his test modifications

He takes his prize:

1. He gets his test modifications
2. He doesn't feel the need to explain his test modifications to peers
3. He brags about his test modifications when he gets good grades and others fail
4. He brings home his test and quiz grades-- WITHOUT BEING ASKED

I have created a monster.

I am so proud!!

How do you spell Elliot (Spitzer)?

Today was the last day of the legislative calendar in New York State. Legislators returned to the Capitol Building Complex (euphemistically called 'The Egg') to pass a flurry of end-of-the-session, go-out-with-a-bang, give-ourselves-a-quick-raise, and not-pass-too-much-that-while-l make-those-who-didn't re-elect a lot of us happy.

So, we are left, like a prom date, after the big fanfare, hoopla, and romance are done, wondering "What comes next?"

We have a New Governor (Eliot is spelled with one L) and Lieutenant Governor Patterson-- the first blind or visually impaired official at this level. There are more websites (election, write in your opinion, transition team, inauguration, online ads, and Hevesi spin doctoring) and levels of social marketing in this administration than you can shake a stick at. The inauguration is shaping up to be uber PC-- with representation from organizations, vendors, business across the state, to make Jesse Jackson's concept of the rainbow coalition look monochromatic.

Meanwhile, we are still wondering if this 'relationship' with Eliot is going to work out or not.....

Stay tuned.

Disability Carnival #3

Check out the Disaiblity Carnival #3. There are several great poems, and essays on the theme of Spirituality.

How to Engage a politician-- Part IX

On Friday September 22, 2006 a band of forty ADAPT members met at Rundell Library, in downtown Rochester. Under the ADAPT ‘invisibility cloak’, we were ‘hidden in plain sight’-- just a group of people with disabilities on a field trip, chatting amicably while watching the Dick Cheney motorcade of regional law enforcement, come to town. Vice President Cheney was coming to Rochester to support Congressman Randy Kuhl at a fundraiser. There were sharpshooters on the roofs of the Convention Center, police on all floors of the parking garage, and four square blocks were cut off to pedestrian and car traffic. A protest action looked impossible. Nevertheless, ADAPTers tightly lined up, and marched across the police line at South Avenue and Broad Street, in to the Vice Presidential Security Zone. RPD met protesters, physically moving wheelchair users and grabbing people by the arm, to pull them back behind the line. Bruce Darling was restrained, face down, on a police car, but that did not stop the ADAPT crew. Norita Darling, Bruce’s mom, saw the incident, but kept on walking. Aware that there were larger issues at stake, she focused upon what needed to get done by ADAPT. Unable to get through the police barricade, the ADAPTers did an about face, and marched off, down the Broad Street Bridge.
We headed for Main Street, wheelchairs leading the way. The group attempted to cross over Main Street, to enter the Convention Center, but was met in the middle of the street by police, effectively stopping traffic. RPD redirected protesters, routing wheelchairs back to the yellow line, in the middle of the street. The ADAPT contingent filled in, urging the group forward, but the police brought in barricade fences. Eventually, the group agreed to go onto the sidewalk, next to other quiet protesters, where we stayed. Several officers were assigned to ‘watch’ us, to make sure we did not attempt to cross the street and enter the Convention Center. (One person literally "took it on the nose" for ADAPT, getting ‘bumped’ in the face with her camera, from a hostile employee of the Rochester Convention and Visitor’s Bureau. In the true spirit of non-violent protest, she did not respond in kind, but she has his picture!)

Q: What does ADAPT do when we are going to be somewhere for awhile?
A: Chant!

Anita ‘O’Brien and Susan Norwood led the group in a variety of chants including:
What do we want? MiCASSA!
When do we want it? Now!
Our homes, not nursing homes!
Free our brothers, free our sisters, free our people now!
Settled into a tight group on the sidewalk, we continued chanting. RPD brought in the mounted patrol, forming a Line of Five in front of the Convention Center. Several Cheney reception attendees and Convention Center staff peered out the windows at the demonstrators. Rochester ADAPT was situated in the front of the crowd. Users of power chairs/scooters were on the frontline, facing the Convention Center. Meanwhile, in the rear of the crowd, members of Rochester ADAPT passed out flyers about the need for Randy Kuhl to sign onto MiCASSA. After about an hour, the anti-war groups in Washington Square Park marched down Main Street, and joined us, in front of the Convention Center. This group was composed of Metro Justice members, college students, gay activists, and anti war activists. Cars driving by honked their horn, in support of our demonstration.
As the protests continued in the non-violent manner, the police became friendlier, asking questions about MiCASSA, tapping their toes in time with our chants, and nodding their heads in support of our cause! At the end of the fundraiser/picture event with Dick Cheney, a special bus was brought in for the Republican fundraiser guests, so they could scurry to safety, fearful that people across the street, behind barricades might ‘get’ them!! While leaving the event, Kuhl staffers and others leaving received a rousing round of “Boo’s!!” from the anti-war protesters.
While the protest was in its last hour, others hit the parking garage with MiCASSA leaflets. The Convention Center was empty, as Vice President Cheney and fundraiser guests were gone. However, a group conversation was in progress in one of the meeting rooms. Being curious, both Mike and Bruce walked in to see Randy Kuhl doing a press conference. Ever ready with a question, Bruce Darling cut off a reporter to ask why Kuhl did not support MiCASSA and would not meet with ADAPT. (Mike Volkmer added that it was much more cost effective than nursing home placements.) Congressman Kuhl replied that this was a staffer oversight and he would be interested in getting more information and MiCASSA sounds like something he would like to support! Bruce got his business card and agreed to follow up.

In reflection, this action was another ADAPT victory! The karma of success in unexpected places continues for Rochester ADAPT!

Question: How do you spell power?
Answer: A-D-A-P-T!

Candidate Forums and Elected Officials

The Center for Disability Rights is hosting an Election 2006 Forum, not a debate. Each person get four to five minutes, to come and explain their platforms, and how it impacts people with disabilities.
-----------------
The Center for Disability Rights and The Regional Center for Independent Living will be hosting a Candidate Forum on Disability Issues for Election 2006. This forum will focus upon key issues that impact people with disabilities.

Do Housing, transportation, and healthcare and education matter to you?
Do you want to know more about the Candidates views on disability issues?

Then come join us!

Monday, October 23, 2006
5:30PM-8PM
Kate Gleason Auditorium
Bausch and Lomb Public Library Building
115 South Avenue
Rochester, New York.

The forum will present Candidates for the offices of:
NY Governor, NY Attorney General, US Congress and NYS Legislature.

The Bausch and Lomb Public Library Building is wheelchair accessible.
Sign language interpreters will be provided.

If you have any questions, or need more information, contact Arlene Wilson at (585) 546-7510 or awilson@rochestercdr.org.

-----------------

This should be interesting, as many never thought through a platform to this degree, even the Gubenatorial candidates. But, as most politicians, they are fast on their feet, and seeking to make hay while the sun shines.

Future DocWilson’s Book Meme

I have seen this great idea on The Goldfish's website, so I wanted to add my two cent...

Future DocWilson’s Book Meme

1. One book that changed your life?
The Autobiography of Malcom X, would be at the top of the list. I man whom American history is just starting to consider for his oratory and personal triumph or adversity.

2. One book that you have read more than once?
Well, I would have to concur with The Goldfish, about The Bible. Not only is it a religious text, but is the source of many philosophical (Proverbs), and cultural (Creationism versus Evolution) concepts and ideas.

3. One book you would want on a desert island?
I do not think one book would do it, so I would have to hedge this one, and go with a completed works set, in a leather binding. I think the collected speeches of Dr. Martin Luther King, Jr. These speeches are motivational, and insightful. I would also go with the Complete Works of Tolstoy.

4. One book that made you laugh?
I'm sorry, I can not restrict myself to one. If I choose The Hitchhiker's Guide to the Galaxy then that means I have to neglect Puckoon, and Three Men in a Boat, and No Bed for Bacon, and Clive James's Unreliable Memoirs, and My Family and Other Animals, and The Cat Who Came in from the Cold, and Pickwick Papers, and....so I won't choose any.

5. One book that made you cry?
One Thousand Years of Solitude. A strange book, that tells the story from the end, and threads its way backwards, to explain tragedy. Gabriel Garcia Marquez has the power to find the paintful, private truth of life and love. gem.

6. One book you wish you had written?
Roots, by Alex Haley. This book created a whole academic specialities around genology, travel through the African Diaspora to slavery sites, and increase the number of African American family reunions. It also helped to decrease several prevalent myths around the dynamics of slavery, and slave families. Fascinating.

7. One book you wish had never been written?
Mein Kampf. It creates a platform for serious consideration of racism, antisemetism and other Ayran disfunctional constructs.

8. One book you are currently reading?
Narrative of the Life of Frederick Douglass, an American Slave, by himself. This is a great book, which gives insights on slavery, and American political thought of the 1800’s. It also is inspiring on how far someone can come, by grit determination and a few random acts of kindness.

9. One book you have been meaning to read?
I have hear and seen various versions of Homer’s the Oddessey. Any book that have been so copied, parodied and retold is a must for required reading.

10. Now tag five people.

Illogical Syllogisms and the Dissertation

Five months of revisions, rewrites, edits.
Done.
Committee approved.
Just when I thought there might be smooth sailing ahead, the dissertation process runs into another snag...NEW procedures implemented.

Q: Was the doctoral student told in advance of submission?

A: No.

Q: Then the doctoral student is grandfathered in under old standards, right?

A: Wrong

Q: SO what happened to due process, uniformity of standards and accountability?

A: Do you want this doctoral degree, or not?

Special Education Determination- A Paradigm Shift

Some good news on the special education front for parents...

August 4, 2006
The New York Times
By Diana Jean Schemo

WASHINGTON, D.C. For more than 25 years, federal law had required that schools nationwide identify children as learning disabled by comparing their scores on intelligence tests with their academic achievement. This meant that many students had
to wait until third or fourth grade to get the special education help they needed.

In regulations issued today after changes to the law, the federal Education Department said states could not require school districts to rely on that method, allowing districts to find other ways to determine which children are eligible for
extra help.

It was the final step in the federal government's repudiation of the old approach, which had come under severe criticism from advocates for children with disabilities, testing experts and eventually federal officials themselves. Advocates for those
children applauded the change.

"If you talk to principals and special ed directors, there is pent-up demand for better ways to serve struggling kids than waiting until they crash and burn in third and fourth grade," said James H. Wendorf, executive director of the National
Center for Learning Disabilities. The new rules also require schools to alert parents as they begin exploring whether children may need special education, another change that won praise from advocates for children with disabilities.

The regulations come after Congress updated laws covering special education for some six million schoolchildren nationwide in late 2004.

Comparing intelligence tests with academic achievement, known as the discrepancy model, came under intense criticism in the debates over the law and over special education.

Federal officials and advocates for children with disabilities contended that the practice of waiting for children to fall behind on tests in third or fourth grade before getting them extra help consigned them to failure, and opened the way for
the disproportionate numbers of poor and minority children to be labeled as needing special education.

The 2004 law abandoned reliance on that approach. And the new regulations favor alternative methods of identifying children who need services, like evaluating the response of struggling children to extra help before the third grade.

The 2004 law also streamlined procedures and reduced the paperwork involved in providing children special education services, and relaxed burdens on schools when children with disabilities had behavioral problems.

A draft of the regulations published in June 2005 prompted an outpouring of 5,500 letters and comments to the Education Department from advocates for children with disabilities, as well as parents, teachers' unions, and state, district and
local education officials.

The department posted the final regulations on its Web site today, along with answers to each of the comments it received. The final regulations will be published in the Federal Register on Aug. 14, and will take effect 60 days later. In unveiling the new rules, Education Secretary Margaret Spellings said her priority was "that we not lose our vigilance for educational attainment for every child."

Advocates for children with disabilities said they were disappointed that the regulations did not address some problems they saw in the 2004 federal law. For example, the law says that instead of reviewing each disabled child's educational plan every year automatically, schools could review them only once every three years, provided parents agree to the change. The regulations do not help ensure
parents are properly notified, advocates said.

"But who is going to make sure that parents now know what they're giving up if they agree to that?" said Ricki Sabia, associate director of the National Down Syndrome Society Policy Center. "The department could have made clear what constitutes
that agreement."

------------------

But it goes to show that constant vigilance is always required....

The Future Doc Wilson: The Season of Hope and Renewal: Dissertation Proposal Submission

The Future Doc Wilson: The Season of Hope and Renewal: Dissertation Proposal Submission

Update:
The Future Doc Wilson has submitted an updated proposal to her dissertation committee...

Stay tuned.

Mastering The 504 Plan

It is that time of year—parents start buying school supplies, putting overpriced sneakers on layaway and developing a new strategy for dealing with teachers, administrators and various other academic interveners, disguised as well meaning and caring purveyors of public school education.

So here is my Five Step Survival Guide to special education advocacy:

1.Have a building based plan. Many districts require special education services to go through a central office. If you can avoid this, by all means do. These people do not know you child, and only have his/her psychological testing, social work evaluations to go by. (Have you ever wondered how you would be described in an evaluation done by a perfect stranger asking you things you don’t tell you best friend?) While this snapshot may be clinically acceptable, it is only a snapshot—you child needs should be based on more than that. If you cannot avoid going through a central committee, still pursue an unofficial meeting with the building based team leader—it may be the speech, OT or PT. In the worst-case scenarios, someone is usually the carryover year to year, and is the de facto coordinator of special services.

2.Know your legal rights. Well meaning administrators and teachers tell parents so much bad, subjective and completely wrong information, its scary. Parents have been mandated to medicate children, allow aversive therapies (electro-shock), deny medication (insulin), etc. that is critical parents have a copy of the IDEA law, the 504 section of the ADA, and the mandatory guide to special education services, which is required (but seldom seen). Learn the appeals process, the grievance process, etc.

3.Know your legal options. There are lots of treatments, therapies and services that are available outside of the school district. Some health departments’ offer home based services to children at the pre-school stage, or children with serious medical conditions. Many health insurance plans cover speech, OT, PT. There are also services through the Office of Mental Retardation and Developmental Disabilities for children with less severe issues (respite, summer camp, special play groups, equipment rental, etc.) If you have to try to wrangle services form the school district, there are disability advocates through centers for independent living (CIL’s), VESID and other local disability rights organizations; let you finger do the walking through the Yellow Pages.

4.Get a second opinion. You child’s kindergarten teacher may know finger paints and nursery rhymes, but that does not apply to disabilities. Most teachers are not required to take any classes about disabilities, or any cognitive impairment. Those fortunate enough to be at a school with a minor or electives have a limited selection, and little or no practicum. Always get a psychological evaluation outside of your child’s home school. This local person never can give a truly unbiased assessment, when they have the feedback of peers, teachers, and building neighbors.

5.Develop your own plan. The Internet had leveled the playing field between parents and practioners. Anything you want to know about any issues, illness or disability is yours for the reading. Gather information, go the libraries and support groups, to bounce ideas around. Use parenting experience to document your child’s strengths, weaknesses, responses to stimuli, etc. This information should be distilled to a one page report to give to new teachers; share the long various with the building based special education/support services team.

Not everyone will value your level of preparation and knowing what you want, but one person will benefit—your child.

Sing Amen, Somebody!

This is a day early, but tomorrow is the 16th anniversariy of the ADA. and I found this song, which would be nice to hum or pass along tomorrow. It is composed by the late husband Justin Dart, who worked so tirelessly and valiantly for passage of the
ADA and who was seated beside President George Bush at the signing of the Americans with Disabilities Act on July 26,1990.
__________________________________________________________

Happy 16 ADA!

LEAD ON!

A tribute to you, the patriots of empowerment! A tribute to
your power!

Dedicated July 26, 2006, ADA 16th Anniversary

(Lyric- the words of Justin Dart, compiled by IDAR Dart,
adapted to the tune of Amen by Jester Hairston)

LEAD ON!
LEAD ON!
LEAD ON! LEAD ON! LEAD ON!

LIVE THE DREAM!
LEAD ON!
FIGHT FOR FREEDOM!
LEAD ON!
THE WORLD IS WATCHING!
LEAD ON! LEAD ON! LEAD ON!

NOWS THE TIME!
LEAD ON!
WE CAN WIN!
LEAD ON!
WE HAVE THE POWER!
LEAD ON! LEAD ON! LEAD ON!

LOVE FOR ALL!
LEAD ON!
HAVE THE VISION!
LEAD ON!
SAVE DEMOCRACY!
LEAD ON! LEAD ON! LEAD ON!

WE ARE ABLE!
LEAD ON!
TRUTH IN ACTION!
LEAD ON!
WITH LIBERTY AND JUSTICE
FOR ALL! LEAD ON! LEAD ON!

Let us use all our creativity to explode the truth in the face
of the nation.

- Justin Dart

The Doctoral Journey and the Search for GPS Mapper

Well, I still continue proposal revisions, and reserach in new directions around the emergence of grassroots leadership. Of late, my travels have taken me to the Motherland in search of provenance for the phrase "It takes a whole village to raise a child." I have also develed into the world of advanced geometry, trying to better understand triangulation.

Keeping in contact with my fellow doctoral travelers, through group lists have been helpful, reducing frustration and giving me perspective. While only half a handful have made it to proposal approval, it does provide hope.

Bioethics: a primer for academics on civil rights and open discourse

Here is my journalque entry of a protest I was involved in last week:
____________________

The morning of July 13th, 2006 started with a consistent wet rain drizzle covering the City of Albany NY. To support “Not Dead Yet”, a busload of Rochester activists traveled to the state’s capital to make their voices heard at the Alden March Bioethics Conference being held at the Crowne Plaza Hotel. They were joined by others from Binghamton, Albany, and the Chicago area.

At 10:00 AM, Bruce Darling greeted the Rochester ADAPTers as they disembarked from the bus. From the bus, the forty-plus activists ventured across the street to stay dry under the awnings of the Ten Eyck Building. A few staff and security appeared nervous, and inquired if the group was there to protest (perhaps at the Office of Disabilities, located in the building). However, the group was focused upon getting into the local cafeteria, to use the facilities and get something to eat. Around 11:30 AM, the group enjoyed hamburgers and fries. About an hour later the group gathered themselves, into a single line outside, to wait. The weather cooperated, as the rain finally stopped, and the sun heated up the city and the group.

At approximately 1:30 PM, the group, wearing a colorful array of T-ADAPT and Not Dead Yet T-shirts marched single filed up the steep hill of State Street, to their destination -- a side entrance of the hotel. Bruce Darling and Steven Drake led the way, as the group marched silently into the Crowne Plaza Hotel.

Disability advocates such as Christie Willson and Frank Johnson, entered the building with determination, walking briskly in a tight formation, down a long hallway, past the conference registration tables, and right into Ballroom A. The group strode single file in front of the conference presenters, podium, and 6’ x 6’ Power Point projector screens, filling the front of the hall. At first conference attendees looked shocked. The group pulled out protest signs with slogans such as “Not Dead Yet”, “Democracy not Dictatorship”, “ADAPT” and perhaps most importantly “Nothing About Us Without Us!” Chris Hilderbrant led the group in a loud chant “NOTHING!! About us… without us!” The group chanted as loud as they possibly could.

The conference had not yet begun. While Frank Johnson was leading his section in a loud, spirited chant, Paul Recor and a few other advocates went through the conference room, to pass out flyers about the lack of involvement of the disability community in a conference about bioethics issues that so critically affect our community.

Half of the conference attendees seemed confused, leaving the room at a brisk pace. The other half of participants seemed unsure of whether to take the flyers, but the majority took them, to read and discuss with their neighboring conference attendees. Others approached the group to ask questions and find out more about the issues around disability rights. A few took out cell phones and began taking pictures and video streaming the events as they unfolded!

At one point a receptionist from the Crown Plaza tried to find the leader of the group in order to force the group out, but the advocates stayed focused and strong. Bruce Darling, Shelly Perrin Mike Volkman and Stephen Drake approached conference organizers, and became the negotiating team with the conference organizers.

As a result of their discussions, Stephen Drake was able to speak in front of the fully attending conference. As Bruce put it, “He actually became the Keynote Speaker for the conference!” Stephen spoke of the mission of NDY and how people with disabilities have been dismissed by both sides of the “cultural war”. He gave personal examples of how people with disabilities are critically affected by bioethics issues, including the story of Rochesterian Joe Bonomo and the difficulty he had getting his own doctor to serve him at home after he had his series of strokes.

Stephen also shared other examples including the story of a 4 year-old girl with autism who was murdered by her mother. Instead of sympathy being garnered for the murdered girl, the media empathized with the mother whom killed her! That is why the disability community needs to have its voice heard at the bioethics table.

When Stephen ended his speech, he was met by powerful applause followed by contemplative silence. The activists slowly made their way outside as the conference recessed for a short period. Stephen Drake was invited to stay but elected to leave with rest of the group. A numbers of attendees came forward express their support of the action; other conference attendees asked group members more about why we were here. We left them with flyers and information and website links that would helpful be insightful.

Q: So, what does a group of disability rights advocates do in Albany, New York when it is only 2:30 PM and the bus home does not leave until 6 o’clock?

A: Go somewhere else to advocate!

After success at the Bioethics Conference, the group decided to pay a visit to Bob Sherman, from the Long Term Care Restructuring project, who is working on a “mega-waiver”. Chris Hilderbrant and the crew walked the distance from the Crowne Plaza past the Capital, up the mighty hill, to 99 Washington Avenue, also known as One Commerce Plaza. The crew entered the plaza and, in small groups, went up to the eighth floor.

We were headed to the office because just the day before Bruce had participated in an Advisory Group meeting about the waiver. Bruce was deeply concerned because it was clear that the waiver was being designed to meet the needs of various groups, like the counties and provider agencies, but that the needs of consumers, particularly those with the most significant disabilities, were being overlooked.

Once situated, Bruce called Bob Sherman, the head of the Long Term Restructuring initiative to see if he would come out and talk to the group. Bob asked how many people were with Bruce. Bruce replied, “about 40.” Bob retorted, “Really Bruce, how many people are there?” Bruce held the phone out and asked everyone to say “hi” to Bob. The crowd shouted back “Hi, Bob!”

Bob told Bruce he would be right out.

When he came out his office, you could see the awe in his face gathering us all in, and having to listen real stories about the importance of personal care. Bob Sherman promised the group that if we scheduled a formal meeting, he would attend to listen even more.

To finish off their trip to One Commerce Plaza, the gang went down the hall to visit Melanie Shaw, the Executive Director of the New York Association of Independent Living. The group thanked Melanie and her assistant Nell Brady for their support and the good work they do.

The group also reminded Melanie that the Center for Disability Rights was the only Center NOT to get any of the $1 million in state independent living funds. In fact CDR get NO state funding. Frank told Melanie, “We’re getting hammered. It’s just wrong.” She pointed out that the Association supported CDR getting funds and agreed to continue to work on it!

The group made their way back to the lobby and was able to get snacks and drinks from a near-by market and Dunkin Donuts. The bus finally came about and the Rochester crew was on their way home. We arrived in Rochester at an early 8:30 PM.

It was a LONG day for Rochester activists, but it was very successful! It demonstrated the power people can have if they want to make their voices heard. By the way, that’s “power” spelled A - D - A - P - T!

What a Wonderful World

My oldest son has received his first paycheck, from his first job! He is quite prooud of himself, as am I, having grovelled, beggged to get him his shot.

But as he is singing Louie Armstong's "What a Wonderful World" in the home office, it is well worth it...

"The Lives They Left Behind: Suitcases from a State Hospital Attic

The Community Consortium has just completed a website and a traveling exhibit entitled "The Lives They Left Behind: Suitcases from a State Hospital Attic," based on research into the lives of people whose suitcases were found in an abandoned attic at Willard Psychiatric Center in New York State. The website and exhibit present the lives of the suitcase owners in all their richness and complexity, and examine the history of psychiatric institutions during the early-mid 20th century through the eyes of those who spent decades within their walls.


The website is at www.SuitcaseExhibit.org and information about the traveling exhibit is at http://www.exhibitionalliance.org/documents/48.doc

Thanks,

Darby Penney
for the Community Consortium

********************************

This is a very moving and informative exhibit. It shows how far we have come as a society, and how far we have yet to go, when it comes to mental health stigma and treatment.

Professional Despair

My proposal has not been approved by the academic review board.Sigh...
I know I was told that they NEVER approve someone the FIRST time...Sigh...
Yet, I am sad and despondent. This picture is a great metaphor though..I am going through a bad patch, but I am still moving, and can look stylish, professional and well turned out.And yeah though I watch through the Valley of Death...

Loosing Momentum...I think I need a Pepsy

I am well on the way to chapter four of my dissertation:
I have my note cards for Grounded theorizing,
I have my data categorized, with section tabs, in specific binders
I have drafts of my proposal on CD, thumb drivers and my PC and laptop
I have seminal reference texts...

But I am alone and tired...
I am missing the interaction of the group for meetings, chatroom discussions, IM cross conversations...sigh.

I have been looking at the sculpture of Susan B. and Frederick Douglass entitled "Let's Have Tea" by Pepsy Kettavong. I have gone and seen it in person, several times, and it motivates me. I am hoping to meet with him to get permission to use it for a metaphorical imagery in my research.

Metaphors motivate me. (Three M's...oooh!)

Welcome to the Summer Solstice

I wanted to share this lovely photo from Diary of a Goldfish
As the summer season officially begins, and we are the closest to the Sun we will be all year, I could not think of a better way to reflect and show appreciation and joy for life, love and my son passing Living Environment (9th grade science). Enjoy the time on the porch, back stoop, 3rd story walk up window or fire escape.

The Season of Hope and Renewal: Dissertation Proposal Submission

I have submitted my proposal and it has passed muster with the forms review of A.B. It has been sent onto the Academic Review Board-- I must wait up to fourteen [14] days for a dispensation.
Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Day 8
Day 9
Day 10
Day 11.......

The Season of Doom and despair

This doctoral journey can be compared to a rollercoaster ride, or a the experience of bipolar disorder, without the personal chemistry.

I achieved committee approval of my proposal, only to be tormented in new, and creative ways by the ARB process. I have submitted by proposal packet four, count them, four times to the forms review chick.

Ways to thwart the Doctoral Student in the ARB Process

1. DO NOT tell them what is required on the forms

2. DO NOT explain how to subscribe to the newsgroups to submit a proposal packet.

3. When documents do not meet standards, do not tell the student why they are deficient.

4. Do not send any helpful information in writing.

5. When a student calls, do not provide any information, unless directly asked.

The further I go in the process, the more I understand why doctoral students:

1. Get depressed
2. Get manic
3. Quit.

The Future Doc Wilson: Occam's Razor or the Law of Averages?

Occam's Razor Cuts Like a Knife

I have met my Waterloo. I have now submitted by proposal application packet to the University Academic Review chick FOUR times. Yes, count them, four. You ask why, gentle reader? That is because there are sand traps, quick sand and sinking sand all along the way. This is the desert of Forms Review. (No one tells you about this part, alas and alack.) This is now this game is played:

1. Require items you do not tell the student about.
2. When the student omits something, do not tell them
what is it, only that they are missing something.
3. Do not put anything that may be helpful in writing.
4. Make them call for clarification.

The Future Doc Wilson: Occam's Razor or the Law of Averages?what it is

Fight the Power, Part XX..

As an Advocate, one must be ever vigillant, because Big Brother and Uncle Sam will always try to pull a fast one...
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Action Alert: CMS Trying to Change the Rules for the Nursing Home Waiver!

Background

New York State has prepared an application for the Nursing Home Diversion Waiver Program. This program, based upon funding structure and regulations of other community based waiver program, allows a livable monthly income for spouses of individuals receiving community-based waiver services. Now, the Center for Medicaid and Medicare Services (CMS) want to change the rules, which would force people to choose between a sub-poverty standard of living, or placing their spouse in a nursing home! We need to send a message to the Directors of CMS not to change the rules!

Action


1. Follow this hyperlink to CDR's website http://capwiz.com/rochestercdr/issues/alert/?alertid=8788736&type=CU&azip=14609&bzip=4115&show_alert=1


2. Go to Nursing Home Waiver in Jeopardy. Press the Take Action button.

3. Type your name and address in the blank boxes.

4. Send this message to a friend!


It is VERY IMPORTANT that the disability and senior communities, and those who care about seniors and people with disabilities take action on this critical issue!

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It is the song that never ends
And it goes on and on my friends...

Where Universes Intersect...

As I review my blog postings to date, I wonder what someone browsing this would think? SO many different threads, that seem unrelated...

But I have found a point where the lines of academia and advocacy intersect...

I was reading the Ragged Edge, BAADD Stories and came across a posting that was not too unususal: where is the commitment to advocacy, civil rights and social protest?

Here is the response I posted:

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The core issue is what I am calling grassroots leadership. In my studies of leadership emergence, I am thinking it crops up like strawberries. They can be planted, and take root, but do not bear fruit for three years after planting. Strawberry plants are also very susceptible to frost, cold and harsh winters, and can die off easily. New leadership is a lot like strawberries. There is a need some someone to be planting new plants (IL leaders) tending to them through the harsh weather (funding challenges, discrimination and institutional racism) that kills off many plants (promising people quit or give up). I am studying Frederick Douglass, and Susan B. Anthony around this topic, but I think it will be applicable to a variety of social activism movements, including IL. We tend to put those who take those big risks integrating public transit, creating access, changing legislation, etc. as BIGGER THAN LIFE. We forget they started with no tools, skills, or training in the issues, like a spindly strawberry plant in the Home Depot or Builder's Square. Someone had to nurture, feed, and tend to them over time, to product the strong, effective leaders we see.

SO all need to get a trowel, a watering can and help tend to some plant; they may be the next leader to take disability rights to the next level.
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If you wait long enough, and keep a sharp eye out, all roads lead to Rome.

Occam's Razor or the Law of Averages?

I have wondered why how my Doctoral journey has managed to avoid major obstacles and drama. Well, life, time or something has caught up with me.

My doctoral committee is why one approved member. So, I now have to wait for the University to go through their mysterious alchemy, to select/approve/bless one of the two candidates I have presented. (So what if I did all of this last year? Why should that count for anything?)

I still have to suffer through an irony of having all four members of the committee approve my proposal, but be unable to submit it, because I do not have three official committee members, only two.

The Season of Hope and Renewal: Dissertation Proposal Resubmission

The Season of Hope and Renewal: Dissertation Proposal Resubmission

One of the things about Spring that people love is the idea of renewal. As the grass, shrubs, and flowers come into full bloom, we feel refreshed, energetic and optimistic at another round of possibilities.

So, I have sent off my proposal – for another round of review. I am optimistic that this may be the final or second to final review by my committee. I await the response of He Who Shall Not be Named. Pending his approval, I can then move forward.

technical glitches

As I continue to master the fine art of blogging, I have wasted an obscene about of time trying to import pictures from the web!!! Why is this so difficult? Is my learning curve turning into a plateaeu?

Motivational Frogs

This is a great allegory, used by Barb Forgione in a learning tool on personal motivation. We so often let others steal our air, metaphorically, as we strive to attain goals and objectives. We have to keep our eyes on the prize, and be strong, focused and undetermined.
http://www.lacanadvocates.org/pdf/motivational-frogs.pdf

As a doctoral student/candidate, I know this all too well.

On Frederick Douglass and other musings..

I await my feedback from my de facto doctoral chair-- He Whom Shall Not Be Named-- as I ready myself for what shall surely be my fifth round of proposal corrections. In the mean time, being one who is on a mission to finish by September or in the words of Tony Bennett, ABD (All By December) I push onto transcribing key Frederick Douglass speeches I seek to analyze. If my dissertation does not become a sensation, at least I can say I contributed to the body of knowledge by transcribing Douglass' longest speech into Microsoft Word!

Each time I read Douglass speeches, his various biographies, writings and publications, I am humbled.

Musings of an ABD

I have reached the end of the doctoral cohort course work phase of my journey. Having started out as two separate cohorts, I have experienced a blending of groups that has worked out for the greater good of all.

Implications
The cohort model of learning is the definitive model for adult learning. UOP has established itself as a platform leader in this arena. The ability to learn from peers who are experts and experienced in a variety of fields, and bring various skills sets, and personal experiences to the learning process has been invaluable. The application of theories, models and readings two teams projects and group work provided opportunities for project management and leadership that will continue to have value far beyond this course.

Conclusions
This course has provided a good opportunity to integrate our learning on leadership. It also provided a final clarification of our personal values,views and understanding of leadership in organizational settings. I wish everyone the best in their pursuit of this dissertation. Dr. Jason Berman, who is the Dean of the Business School at St. John Fisher College in Rochester, NY likes to remind me that a doctorate is not a sprint, but a long distance run. There is a Biblical adage:

"The race goes not to the swift nor to the strong, but to those who endureth."

Regardless of our projected, unknown or undetermined date of graduation, wemust remember that to achieve success, we must endure.

Easter Thoughts

Easter is on the horizon. I am looking forward to this day, as it is a family gathering event. Last week my mother was in a six car pile-up, and the only thing that was hurt was her bag of snacks for her bowling tournament! It has given me pause to consider our relationship, and the importance she has in my life. Our time on this earth is not limitless-- we need to remember to put aside petty differences and inconveniences, and to appreciate our loved ones, while we have them.

So-- say amen, and pass the ham!

Jazz, SOTA and El Trumpeto

My son Jerel attended his first Heritage Festival Competition in Williamsburg, VA. You would think he has been a jazz man all his life! Packing instrument, dress clothes, lucky G clef tie (tremble clef for the uninitiated). The 9/10 Jazz band- the youngest ever from School of the Arts- won a Gold Medal!.

Now he is King of the World!

What Tennessee Learned from ADAPT- Free our Sidewalks Now!

My words do not do justice to the Tom Foolery of Tennessee State government, so I have just reprinted the article. (Otherwise, no one would believe this!)

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Wednesday, 04/05/06

State lawmakers don't control city sidewalks Bill would allow legislative leaders to decide which protests to tolerate City sidewalks exist for the benefit of all people — lawmakers, state workers, pedestrians, immigrants, business people, the homeless and, certainly, protesters.

A bill introduced into the General Assembly ignores that fact, treating the area around the state Capitol as the private realm of lawmakers. Wisely, Sen. Bill Ketron, R-Murfreesboro, is attempting to amend the bill to make it more respectful of constitutional rights. A wiser solution still would be to dump the bill altogether.


The legislation was sparked by the protest last month of the group American Disabled for Attendant Programs Today, or ADAPT. Protesters in wheelchairs clogged sidewalks and streets around the Capitol much of the day, making it impossible for some state employees to exit from their buildings. ADAPT wanted to talk to Gov. Phil Bredesen about the lack of home- and community-based care for the elderly and disabled.

As a result, Sen. Jerry Cooper, D-Smartt, Sen. Mark Norris, R-Collierville, and others dropped legislation into the Senate hopper that gave the House and Senate speakers, acting jointly, the power to direct the highway patrol to assume control of traffic on streets, intersections and sidewalks around the Capitol.

Certainly, the tactics of ADAPT enraged many state workers and many Nashvillians. Even some observers, including this page, who agree that Tennessee provides too few options for the elderly and disabled criticized the group for causing such havoc in downtown Nashville.
But giving the legislative leaders the power to declare city sidewalks off-limits to citizens is a solution far worse than the problem.

Moreover, last month the protesters were motivated by the state's health-care policy. Next month, they may be protesting for or against abortion rights or the war in Iraq or a tax-increase proposal or the pending execution of an inmate on death row or a lack of funding for education. The legislation just begs for legislative leaders to pick and choose which protests would be tolerated and which would not.

Several years ago, horn-honking protesters circled the Capitol in their cars in an effort — ultimately successful — to derail a state income tax. Workers in downtown buildings complained that the noise was so loud that it disrupted their work. If memory serves, no member of the General Assembly suggested a bill that would have denied the rights of those individuals.
Protests can be disruptive. There are already laws on the books, however, that allow police to clear streets to ensure the flow of traffic. Metro police and state troopers can work together so that future protesters make their point without barricading workers in their parking garages. They don't need the help of Big Brother. •

Here are pictures from the Tennessean newspaper on the action.

Dissertation Warming Trend Ahead

• Good news! University of Phoenix has decided to let those in the last dissertation course enroll for the independent study course for dissertation writing of chapter four (research) even if the proposal his not been approved! This is a good news, bad news thing. The good news is the process is not on hold, as most people (count -0) have been able to:
• take classes
• write proposal
• have a life
• get committee approval
• have a life
• not get divorced
• go to work
• have a life...(you see the pattern)

The bad news is that for those who have not written their proposal (ie. First three chapters of their dissertation yet) it looks like a long, cold winter in ABD (all but dissertation) Land. If if isn't done by now, five more weeks is not going to get it there.

Also, of the ten in my cohort, only about four have even submitted a first draft to their committee chair. (Forget about the rest of the Gang of Three!) They have yet to:

• have their feelings hurt
• feel highly ignorant
• feel highly illiterate
• experience mid-grade depression
• take to the bed
• question why they put themselves through this is the first place.

Me, myself, I have to climb that last proposal hurdle..my own personal Mr. Smith (like in the Matrix), and I am Neo.

So, now..I don't run, but turn around and battle (ie. make the nth set of corrections and Battle the Matrix for their acceptance).

Dissertation Cold Front Ahead..

It has been almost two weeks since I sent in my recent proposal to my dissertation committee. As the time lengthened, I started to become more optimistic, figuring it has been approved. (I tend to be an optimist in general.) I also got an email form my academic advisory wanting to clarify who all would be on my committee. So, I put two and two together, and got twenty-two. But I then got the cold front from the committee member-- its not soup yet. (Sigh...)

But if life is not easy, at least it gives you some good with the bad. My second article in the SAS (School of Advanced Studies) Post was well received, and one person wants to add it to the curriculum for the EdD program at UOP in Michigan! Hurrah! (They like me...they really like me!!)

Reflections on my first ADAPT Action

Last week in Nashville was exciting, exhilarating, and exhausting! As a student of history, I have read a great deal about Martin Luther King, Cesar Chaves and others who engaged in protests, marching on government offices to raise public awareness on issues of equality. However, it is one thing to read about it; it is another to actively participate! This experience helped me to understand that we have a great deal of benefits living in the USA, but there is a level of responsibility that is required in a democracy. Laws, statues and funding are not written in stone, but are amorphous entities, always in flux. One's civil rights are not guaranteed in perpetuity. Someone has to take on the challenge of following legislation, keeping elected officials accountable to the constituencies that got them elected to office, and seeking ways to make the quality of life better for all Americans. Before I started at the Center for Disability Rights, I was aware of the challenges of people with disabilities. What I was not aware of was how powerful a role advocacy can have in ensuring quality of life, personal rights and impacting legislation.

So now I have the flu from being out in the elements in Tennessee-- but I have gained a better scope of the impact of the work that I do.

Civil Disobedience- ADAPT style

I participated in my first political protest last week!
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This was the action on Wednesday, March 22nd, as told by Chris alterable, Director of Advocacy:

Hi Y'all. After two days of cold, wet and windburn faces, Wednesday gave us a break. With clear skies and a high of about 50, Wednesday with ADAPT was looking pretty comfortable. Instead of marching to our destination we were loaded onto buses and transported. With 400+ people and nearly half in wheelchairs, moving this group is no small accomplishment.

We got no help from local paratransit - I'm sure you're all surprised. So we were left to our own devices. Several ADAPT chapters had large accessible vehicles and many people had their own vans. Despite one bus that had space for 20 wheelchair's and two more buses for about 10, it still took three runs of ALL of the vehicles to get to where we were going. It was amazing to watch.

We took our group and unloaded in the parking lot of Tenn Care, the state's Medicaid program. Through Tenn Care, Governor Bredesen has cut 300,000 people off Medicaid and has forced people into institutions. Our group lined up and circled around the perimeter of the sidewalk. A group of Tennessee ADAPTers approached the front door to deliver a letter on behalf of the people in institutions who have asked to get out.The media had been following us all morning so they were all over the group that approached the front door. ADAPT then burst into a chant of "6,700 want to get out!". According to the most recent CMS data, 6700 people in nursing homes have said they want out (NY's number is nearly 20,000).

We then rolled our group onward to do a second action. About 1/2 a mile away fromTenn Care is the local office of HUD - housing and urban development. We walked over, and crowded onto the front patio/ sidewalk, chanting "affordable, accessible,integrated housing". The director of the office came down to talk with our group. We used this action as an opportunity to launch a nationwide campaign targeting Alfonso Jackson, the head of HUD. After our time at HUD we made our way back to the hotel, still followed by the media. The great part of the day's media coverage was that the press really started to get it! Chris
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Report on Tuesdays activities March 22, 2006, from Chris Hilderbrant:

Hey All. Another long day in the cold started with a drizzle as we lined up at 12:30.

After 75 ish total arrests yesterday; we were determined to take our message right back at the Governor. We marched back to the Capital where we were arrested yesterday.We lined the sidewalks, facing the Capital and held a press conference. Thanks to all of the work yesterday, the press was actually following us most of the way to the capital. We held our rally with some songs and chants targeting the Governor - whose office faces the street we were on. At the conclusion of the press conference, a group of about 40 ADAPTers broke off to take our demand list directly to the Governor, since he had refused to meet with us. The group tried to enter the Capitol, an allegedly public building, but were blocked by police cars parked end to end.

The group then revised its strategy, marched back to where the rest of the group was, and took over one of the same streets we had blocked yesterday. The cops swarmed the scene quickly after having taken a lot of criticism for being 'too genteel' with us yesterday. As soon as Metro Police and the SWAT Team (!) moved in on our people, the media swarmed in as well. Several stations did live broadcasts and frequent live updates as the arrests progressed - it was coverage like I've never seen!The cops quickly arrested and loaded up the able bodies then moved onto the wheelers. The cops had three large paratransit vans on hand - but it wasn't enough! They had to drop off their first load of ADAPTers and send all three vans back for more. We all stayed, cheering on those who were arrested, as they were driven away.

Strangers stopped some of one the walk back to tell us they support us and asked more about the issues. I've talked to other people staying in the hotel and apparently the protests have been covered from coast to coast. It's been a great couple days of action and there's another one to go. More details tomorrow.

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This was the view from the ground, sent by Chris Hilderbrant: Tuesday, March 21, 2006 9:5-8pm.

Hey all! It's now late Monday night. After the long bus ride down Saturday and a day of great testimonials, today was the time for action. The expected weather of the day was cold and wet and Mother Nature lived upto it. We started our morning line up late - 11am - in a heavy downpour. People were well bundled, covered in ponchos and powerwheelchair controllers were protected by shower caps! 41 degrees and a heavy rain as we marched to do a short press conference on Legislative Plaza, in front of the Tennessee Capitol. After the press conference, our total national group split into 6 teams and proceeded to carry out the real action of the day.

In the matter of a few minutes we had shut down four intersections and blocked two parking garages! The cops were so unaware that they actually helped my group block half the intersection before they realized what was going on. Throughout the day, Bruce (CDR ED) and I were part of the negotiating team while Shelly Perrin was a leader in her group. The rest of the Rochester group did fantastic work that they can better explain than I.

Ultimately, Governor Bredesen refused any demands regarding ending policies that force our people into institutions. He even refused to even meet and discuss the issue. (Read his letter- it is an interesting how an elected official can spin an event...) http://www.tennessean.com/assets/pdf/DN22731322.PDF

At that point, the police began to negotiate with us about the arrest.This was the craziest arrest negotiation I've ever seen! The cops plan was to arrest our able bodied people separately from those with disabilities. Then the next nonsense they planned was amazing: people with disabilities weren't going straight to jail... First we would be transported to a hospital for a full physical! And if that's not enough, he indicated that at some point in that process they would be separating us from our wheelchairs. Then we could be taken to jail. Nevermind that taking our wheelchairs away from us is illegal. Many of us wanted to be arrested now so that we could get the physical! The joke was that the police fine would probably be less than the copay for a similar doctor visit. So of course ADAPT called the cops bluff and after the first couple arrests, the cops realized how impossible their plans was on themselves. They immediately started issuing citations and releasing us on the sidewalk. Our groups then made their way back to the hotel and after over 9 hours in the nasty elements we were back to the hotel.

The action got huge local coverage and has certainly increased the public awareness of how bad Tennessee's long term care system is and should create a great deal more pressure on the Governor to do something! More action tomorrow! G'night. Chris

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Doctoral Publishing on the Quick

I have published my second article in the School of Advanced Studies newsletter! I am plesantly surprised at the positive response! I have received about a half dozen positive comments, from people who share the same fears, struggles and stress. Seems they found my words encouragining. Who'd have thunk it?

Tales of Doctoral Depression and Proposals

This past few weeks have been a roller coaster of emotion and activity. I am in the process of making changes to my dissertation proposal. Naive me, I thought "How hard can this be? I am a doctoral student. I have made it through various courses, professor changes, unemployment, hospitalization (stress related), various illnesses of family and children...I can write a 100 page paper!So, I get the psychological pimp slap, as my first proposal comes back with so much red (track changes) it looks like it should catch on fire! I take the bed with a low grade case of depression for the weekend. I then steeel myself for the next phase of rewrites, as Conan O'Brien http://www.nbc.com/Late_Night_with_Conan_O keeps me company.

Second set of corrections- I am ready! I am clear! I have mastered a new level of track changes, even if I still can't master this BOLD software http://www1.ecxmall.com/stores/bold-ed/StoreFront.bok that is suppose to make writing this dissertation and point and click snap. So, I send off my second proposal; I add the plethora of UOP required forms that make up the proposal package, as I am so sure this is it! Like true love on a first date, or buying a lottery ticket-- this is it!Yes, I got the back handed psychological pimp slap. So, I take to the bed again, and consider do I want to drop out of school or not...

http://www.cardinalcollective.com/blog/archives/2004/02/000748.htmlBut my angel and peer mentor [Doc Do It] rallies me on, reminding me I have gotten the farthest in the process of both Doctoral Managment studet cohorts. She encourages me to call my committee members that are giving me the most fever and talk it through. My mentor gives me the pep talk, and encourages me to strike whatever deal with the Devil (ie. the committee member who is giving me a hard time) and GET IT DONE!I am a loser, but I am in front of the pack...Sigh...

So, third time is the charm? I sent it off -- AGAIN-- on March 13.

Stay tuned!

Introduction

Welcome to my blog!

I am what Charles Handy defines as a portfolio person- I have three jobs (consultant, college instructor and disability lobbyist) and am a full-time doctoral student. I live in upstate New York, in a former manufacturing engine of the region. As Rochester,NY seeks to find its new identify in the changing economy, I too am seeking to find my new direction in teachings, training, research and advocacy.

Talk to you soon!