Notice: Our next PMPA Board Meeting will be held at 10:00AM on March 29, 2014, at the location of PMPA and the Center for Outcome Analysis: 426-B Darby Road, Havertown, PA 19083. Please call 610.246.5961 if you would like to attend.
The Pennhurst Memorial and Preservation Alliance is proud to be moving towards our vision as a partner in gaining a national presence honoring the past struggles of people with disabilities and their continual movement towards freedom and civil rights. We are also pleased to welcome two new dynamic board members, who were both very much involved with Pennhurst's historic events.
As always, thank you for your interest in our work!
Washington DC Meeting with
Smithsonian's National Museum Curator
Co-president Jim Conroy met with Smithsonian's National Museum curator, Dr Katherine Ott, of the Smithsonian's National Museum of American History. Dr. Ott was also the exhibition curator for "The Disability Rights Movement", which looks at the efforts - far from over - of people with disabilities, and their families and friends, to secure the civil rights guaranteed to all Americans. This exhibit physically existed in the gallery from July 2000 to July 2001, marking the 10th anniversary of the Americans with Disabilities Act,. It is now a permanent online exhibition. http://americanhistory.si.edu/disabilityrights/welcome.html
Meeting at the Smithsonian with Madeleine Will, Jim Conroy, and Katherine Ott.
After mentioning the upcoming meeting with Madeleine Will over lunch at the Mayflower Hotel in DC, Madeleine asked if she could join Dr. Conroy. Madeleine Will is the parent of a son with Down syndrome and was Assistant Secretary for the Office of Special Education and Rehabilitative Services (under the U.S. Department of Education) in the 1980's and has continued her advocacy at the national level for over three decades, including Vice President of Public Policy at the National Down Syndrome Society.
Dr Conroy stated, "When we arrived, Dr. Ott had invited Ms. Beth Ziebarth, who is in charge of accessibility programs and policies of the Smithsonian. The four of us spent half an hour getting acquainted in the conference room, then 5 minutes in Dr. Ott's full-to-the-brim-with-fascinating-stuff office, and finally a half hour in the medical history storage room. Dr. Ott showed us some of the most intriguing items that have been donated, and fascinated us with tales & nuggets of disability history. The Smithsonian is really the key ally for our long term vision, and I think we now have that linkage made".
PMPA will remain in touch with these allies regularly.
NBC Filming Begins at Pennhurst
An NBC production crew of Peacock Productions visited Pennhurst for filming and interviews. Two former residents of the Pennhurst State School and Hospital attended the filming and were interviewed as well as Co-president Jim Conroy. Jim stated, "This show is not going to be about ghosts or the paranormal. As I understand it, the aim is to tell some of the story of our treatment of folks with disabilities via the "wasteland" of all the empty buildings of Pennhurst". The two former residents shared their memories of life at Pennhurst. These are the sad memories that are so important for the general public to hear, to assure that we never go back.
There is some reason to hope that the PMPA's participation in all the paranormal-oriented endeavors not only lent some air of dignity and factual information, but also raised PMPA visibility so that more historical and socially conscious shows tend to contact us first. People are beginning to finally understand that the real story of Pennhurst is far more compelling than the imaginary imagery of the 'haunt".
Dr Conroy also had an unexpected and enjoyable meeting with Pennhurst majority owner, Mr. Tim Smith Senior and his son, Tim Smith Jr. at the site, where they discussed their thoughts pertaining to the long term future of the Pennhurst buildings and campus. There is always hope that something wonderful will become of the campus and the rich history of the people who lived and worked there.
The ADA Legacy Project
The ADA Legacy Project at http://adalegacy.org/
is an organization that is in line with the PMPA mission. PMPA Advisory Board member Colleen Weick of Minnesota's DD Council is a member. Katherine Ott of The Smithsonian Museum is an advisory member. This group seems ideal for us to join and further the concept of a national presence for memorialization. Therefore, The Directors of PMPA completed the membership application to join this organization.
The mission of The ADA Legacy Project is to honor the contributions of people with disabilities and their allies by:
- preserving and promoting the history of the disability rights movement;
- celebrating the impact of the Americans with Disabilities Act (ADA), as well as other related disability rights legislation and accomplishments; and
- educatingthe public to create opportunities for inclusion, access, and equal rights for the future.
Preservation, celebration, and education: this is how The ADA Legacy Project will honor this historic civil rights legislation and create its legacy: a world in which every citizen is accepted for who they are.
Co-Presidents Spread the Word
Co-presidents Jim Conroy and Jean Searle presented a session at the TASH Conference about Pennhurst in December, titled "We Must Never Forget: The Lessons of Pennhurst". Jean presented at another two sessions, one on self-advocacy and one on self-advocates becoming board members, with advisory board member Mark Friedman. Jean is currently the Pennsylvania TASH Chapter president.
Jean Searle and Mark Friedman
The TASH Conference is the advocacy, networking and educational event of the year, attracting speakers and attendees from all over the world. Each year, self-advocates, educators, service providers and others come together to learn, share and grow. TASH Conference participants hear from the nation's leading experts and advocates on topics such as inclusive education, customized employment, community supports, health and wellness and advocacy. The conference features more than 200 educational sessions and a number of networking opportunities, including the self-advocate and young professional forums. Most importantly, TASH Conference participants contribute to national advocacy efforts that improve the lives of people with disabilities, and advance the work of professionals in the field.
The PMPA Welcomes Two New Board Members
has been a life-long advocate for persons with a developmental disability and their families. While starting his career at the The ARC of Philadelphia, his first visit to Pennhurst was the moment that forged his commitment to end the need for institutions and has spent his professional life creating community alternatives. He also introduced Bill Baldini to the conditions at Pennhurst, and this led to Bill's award-winning documentary Suffer The Little Children.
While Pennsylvania's Commissioner of Mental Retardation in 1971, Ed promoted the principles of community integration and inclusion as the basis for all state services and redrafted state laws, regulations and funding guidelines to be consistent with those principles. He designed and created the first statewide community living program and family support services in the nation. He also spearheaded the implementation of the first Right to Education Federal class action lawsuit so all children with a disability would receive a free appropriate education and, together with Governor Milton Shapp, signed the Consent Agreement. This provided the model for the eventual passage of national legislation, P.L. 94-142. Ed has also been the executive director of local ARCs in Pennsylvania, California, and Connecticut; special full-time consultant to the Directors of the California Dept. of Health and Dept. of Rehabilitation; and headed a major planning effort for the New Zealand government together with volunteers, parents, professionals and elected officials that led to a renewed emphasis on community based disability services and the closure of the local residential institution for persons with an intellectual disability.
Yvonne M. Husic, Esq.,
is sole practitioner of the Husic Law Office, located in Harrisburg, where she focuses mainly in the area of special education law. Ms. Husic has 30 years experience in special education. She worked for the Pennsylvania Association for Retarded Citizens (PARC), currently The Arc of PA, as Director of Governmental Affairs and Advocacy for 16 years during the closure of Pennhurst and with local ARC Chapters prior to that. Ms. Husic has 20 years of experience as an attorney practicing in the area of special education law, both at the administrative level and federal court litigation.
Fundraising Campaign Begins for the Development of Traveling Displays
If there is one important message we have received over the past few years, it’s the realization that as time goes by, more people are asking for the real Pennhurst story. People outside the realm of the disability field are questioning societies past treatment of people considered “the other” with disbelief and shame. We can go on and on about how much we have disapproved of the haunted attraction at Pennhurst. However, if anything good has come from it, it would have to be the growing number of people, both young and old, wanting more information about the real facts regarding this moment in history…a history of atrocities, wrong-doings, the strength of the human spirit, and how a wrong can be made right and continue to improve the world decades after the last doors were closed. It is an undeniable fact that humans at their very nature are inquisitive and have a need to gather deeper insight into what actually went on at Pennhurst beyond the ghostly facade of the “Haunted Asylum”.
We at the Pennhurst Memorial and Preservation Alliance are well aware of this growing need. Even though our co-presidents are continually traveling to both local and national conferences to tell the story, we need to add another format that can travel independently, be rented out and can remain in a public building for a day, a week or a month, if need be. A dynamic traveling display could be used in colleges, libraries, community gatherings, museums, conferences and a variety of training locations.
After visiting the DisABILITY Museum in Buffalo, NY this spring and examining their traveling displays, we are confident that now is the time to begin the process of developing our own. The DisABILY Museum has been graciously sharing their expertise in this endeavor. We are focusing on retractable banner displays, which will cost approximately $500.00 a piece at a total cost of $3,000.00. We anticipate six screens will be needed to sufficiently tell the story. That cost would include the shipping containers. While we patiently wait for the publishers at Penn State Press to finalize our book, “A World Apart-The Story of Pennhurst State School and Hospital”, we will move forward with this exciting next goal. Our book has organized our thoughts and will make these traveling displays somewhat easy to design although we will still have to tediously summarize its chapters.
So, we ask you, our reading public, and our friends of the “real” Pennhurst history, to consider donating to this important campaign. There is no amount, big or small that will not be valued in building these displays. Over the next three months, all contributions that come into our PayPal account will go 100% towards these displays. Pennhurst Memorial and Preservation Alliance is a non-profit charitable 501(c) (3) organization and your contribution is tax deductable. We will post your names, as contributing members in future newsletters along with a personalized “Thank You” card, worthy of framing. If you choose to sponsor a full display at $500.00, we will proudly display your sponsorship on the display. The real Pennhurst story must reach as much of the public as possible to assure that “we never go back” and that all people are worthy of our respect and dignity.
Thanks for your consideration!
NBC Contacts PMPA for New TV Series
A producer at NBC in New York City recently contacted Jim Conroy to set up a meeting to discuss a new TV series pertaining to the treatment and care of people with disabilities who lived in institutions.
The producer from Peacock Productions explained, “It will focus on the history and the different ways that patients were treated over the years. We particularly want to examine the architectural modalities of the buildings themselves that were aimed at a moral kind of therapy. We then want to focus on the years that followed and the changing techniques of treating patients. This is a non sensational show that will steer far away from the idea of ghost stories and torture chambers (as some hospital shows seem to focus on).We’re the anti-ghost hunting show if you like, focusing on history rather than hype, and architecture instead of shock value. Pennhurst immediately struck us as a beautiful and preserved part of American history.” NBC filming will begin at Pennhurst in early November.
Here is additional proof that the public is hungry for the real history of Pennhurst!
Jim Conroy to Co-author New Book
Dr. Jim Conroy, co-president of PMPA will once again be writing and compiling information for a brand new book titled: Threshold of Freedom: The Revolutionary Promise of Self-Determination for Citizens with Developmental Disabilities. He along with co-author Patricia Carver, founder and owner of Community Drive Inc. of Brighton, Michigan, had their proposal accepted for publication by The American Association on Intellectual and Developmental Disabilities. The AAIDD was founded in 1876, making it the oldest inter-disciplinary professional society with a focus on intellectual disability in the world.
According to Dr Conroy, “A vast majority of the book will focus on the collective writings of Tom Nerney.” Tom is a long-time advocate for people with developmental disabilities, is director and co-founder of The Center for Self-Determination in Ann Arbor, Michigan and author of Lost Lives. The Center for Self-Determination is a national effort to help individuals with disabilities, family members and professionals implement the principles of self-determination. Self-determination is based on five core principles that support the belief that all people have the right to choose where they will live, how they will live their lives and with whom they will share them. They have both the right and the responsibility to use their lives to contribute to their communities in meaningful ways. A key part of self-determination is having personal control over the resources allocated for their support. The forward to the book will be written by Madeleine Will.
PM&PA Advisor Dennis Downey on Radio Smart Talk
In the weeks and months after a governor proposes his or her state budget, there will be individuals and groups who will criticize the governor's spending priorities. The outcry is usually louder when funding cuts are proposed. Last year, Pennsylvania Gov. Tom Corbett's proposed budget slashed funding for public education by about a billion dollars. The governor said the reduction was to offset stimulus money from the federal government that was no longer available. Public education advocates, schools, administrators and teachers made dire predictions. The final budget resulted in cuts of more than $800 million. The full impact may not have been realized yet. This year, proposed cuts in state funding to state-related and state-owned universities have gotten most of the attention. However, at the same time, advocates and parents of children with intellectual and mental disabilities are aggressively fighting the governor's proposal to reduce funding to programs they utilize by 20%, while providing one block grant to counties who would administer services. In fact, a coalition of advocates have gone as far as filing a lawsuit against the state, saying it is not meeting it's obligations. On Wednesday's Radio Smart Talk, we'll hear from several of those advocacy groups. Since litigation is pending, Pennsylvania Secretary of Public Welfare Gary Alexander has been invited to appear on a future program.
Answering the Call of Conscience: An Economically-Viable Path to a Sensitive Re-Use at Pennhurst
Preliminary Financial Feasibility Analysis, Historic Restoration of Pennhurst, August 2011
The nationally-renowned firm Urban Partners, with the assistance of grant funding from the Bard Foundation and the National Trust for Historic Preservation, undertook an Economic Feasibility Study to see if and how the results of the 2009-2010 Community Design Collaborative Re-Use Design Study could be implemented. We are pleased to announce that the study has shown that the sensitive, meaningful re-use of 11 historic core buildings is financially viable. Download Urban Partner's report here.
Some important points:
- The Community Design Collaborative study said the current building stock was the site’s greatest asset, and that it could be re-used without precluding a range of other use types on the property;
- The township’s preservation ordinance supports preservation here;
- The area’s most reputable real estate market analysis firm has found a use that could achieve preservation and still allow other types of development on 75% of the rest of the site;
- An investor is willing to provide up-front funding of $15 million, with the net result of a higher-quality end product.
Call of Conscience: A Video Presentation
This video, produced and directed for the PM&PA by Heath Hofmeister of Electric Machine Productions, culminates the historic significance of the Pennhurst campus with the need for appropriate preservation and rememberance. Please take a moment to view this amazing video.
The Story of Beautiful Girl by Rachel Simon
(The Pennhurst Memorial and Preservation Alliance receives a 6% contribution through your purchase using the link on the left)
Inspired by the lives of people who lived in Pennhurst and its peer institutions The Story of Beautiful Girl, written by Rachel Simon, tells the story of two individuals, a deaf man (Homan) and a woman with an intellectual disability (Lynnie), who escape from an institution in Pennsylvania in 1968 with the woman’s newborn daughter. The story unfolds over several decades, and includes many issues familiar to those in the I/DD community: the abuse and dehumanizing conditions in the institution, the advent of deinstitutionalization, the value of dedicated Direct Support Professionals.
Rachel Simon wrote about her sister, who has an intellectual disability, in Riding the Bus With My Sister. Her latest book intertwines many issues such as the right to community living, romance and sexuality, self-expression, spirituality and independence.
Visit Rachel's website here to read an excerpt from the book (scroll down the page until you see "About the book" and click on "First chapter excerpt" on the right).
About Pennhurst: A Place of Triumph
The recently unveiled Pennhurst Historical Marker, Spring City
Once called the shame of the nation, Pennhurst was the epicenter of a civil and human rights movement that changed the way the world saw people with intellectual and developmental disabilities. The atrocities of neglect at Pennhurst resulted in Supreme Court litigation that sounded the death knell for institutionalization worldwide. Pennhurst stands as a monument not just to the despair of social apathy but more importantly to the bright triumph of an engaged citizenry--and the eternal hope that great change is possible from the cumulative efforts of caring people. For these reasons it must be preserved.
Pennhurst was the battleground in a monumental struggle to secure basic human rights for the last group of Americans to attain privileges assumed to be the natural freedoms of all persons. Pennhurst's historic and beautiful campus is, like Valley Forge and Independence Mall to the east, hallowed ground in the struggle for dignity and self-determination, a western anchor to a freedom corridor, that, though stretching but a few miles, reaches all the way around the world.
Through preservation and adaptive re-use of the historic Pennhurst campus, the Pennhurst Memorial and Preservation Alliance seeks to ensure that those achievements won at Pennhurst are neither lost nor forgotten. We seek to reclaim this once painful place as a center of conscience, healing, and outreach. This process is essential in the creation and preservation of a society where, all people are valued and respected, and where all people have the knowledge, opportunity, and power to improve their lives and the lives of others. Join us.
Past Update: PM&PA's Statement on Gov. Corbett's Proposed Budget
The PM&PA joins advocates and family members in decrying the cuts in support for individuals with intellectual disabilities found in the Governor's proposed budget. History tells us that, in times of financial stress, people with disabilities and others in need are often the first to suffer. "Fiscal responsibility" has been cited as the justification for most of the worst abuses visited upon people with disabilities, as people are forced from their homes and communities into large congregate institutions. Paradoxically, these unacceptable institutions are actually the most expensive option both for society and the people whose community supports are being slashed. Please join us in speaking out against these cuts and in speaking out against taking a path that may lead people back to the days of dehumanization and enforced idleness.*
*The original demonstration of the fiscal irresponsibility of costly, ineffective institutional models was completed as part of the Pennhurst Longitudinal Study. Since then this finding has been confirmed in dozens of studies and policy analyses. The known facts, and the fundamental error of "economy of scale" thinking in this regard, is briefly summarized here.
Past Update: Local, state, and national organizations on Pennhurst's Zoning Change
Click here to see those letters attached to the PM&PA's letter to the Chester County Planning Commission.
Past Update: A Statement Regarding the "Pennhurst Haunted Asylum"
Since PMPA posted its statement regarding the proposed Haunted Asylum at Pennhurst, it has become clear that some people do not understand our position. Our original statement attempted to cover what has been a long and complex process of negotiation with the owner of the Pennhurst property. That detracted from our intent. To be clear, PMPA is completely opposed to the operation of a haunted attraction at Pennhurst that portrays people with disabilities in a demeaning and degrading fashion....
About our Mission and Board of Directors
The mission of the Pennhurst Memorial & Preservation Alliance is “To honor at Pennhurst the ongoing civil rights struggle of Americans with disabilities.” PM&PA Board members are voluntary participants in this non-profit mission. PM&PA's Board members have not accepted, nor can they accept, payment for activities related to the PM&PA.
Principal drawing by Emily Scali
Click Here for Emily Scali's drawing of Admin, Mayflower & Limerick buildings
Official Statement Regarding Trespassing on the Pennhurst Property