From the Chair
In keeping with the theme of reprinting articles from past Perspectives in these final editions, I chose the following article. It is an example of how we must stand up for our rights, whether it is local or the University of Michigan.
THE SQUEAKY WHEEL GETS THE GREASE
Bruce Sachs /Barbara Oniszczak
In early March all members of the Michigan Polio Network Board of Directors received a personal invitation from the office of the President of the University of Michigan to attend a “Celebration of the 50th Anniversary of the Polio Vaccine Announcement” to be held on Tuesday April 12, 2005.
The venue was the Rackham Auditorium, with lunch at the Michigan League. Not being familiar with the campus, I called the President’s office to inquire about handicapped Accommodations. I was informed that there was a parking structure about a block away and that there were no accommodations made for either handicapped or valet parking.
I sent the following letter to the University.
As First vice Chairman of the Michigan Polio Net-work I was planning to attend the celebration of the Polio Vaccine announcement, but after checking with our office I was informed that there were no parking provisions made for handicapped persons. In so much as many of the members of the Network are handicapped and in wheelchairs, scooters, etc. I had assumed that there would be valet parking available.
Due to the lack of handicapped accommodations several of the Board members of the Network will not be attending
Sincerely, Bruce E. Sachs
Barbara Onisczczak also communicated with Julie, a committee member at the U of M working on the April program. She stated that her reason for sending a letter of declination was due to inaccessibility to the building and no seating at the reception. Walking from a parking structure was not a viable option, nor was the stair climbing into the hall or walking down the length of the building to the elevator. Accessibility issues were never considered in the planning per Julie.
On April 1, 2005 I talked with a person from the President’s office planning committee. I was in-formed that the committee met with Sunny Roller and that there will be curb side handicapped parking and a ramp to make the entrance more accessible.
They also will have personnel available to offer assistance as needed. It is unfortunate that we had to bring this to the attention of the University but at least they have tried to correct their mistakes.
Although you will not read this until after the event, this does show that we need to stand up for our rights and make everyone aware that persons with disabilities would not be excluded because the venue lacks handicapped accommodations.
Taken from Polio Perspectives vol 20 No 1 Spring 2005
We hope all of you had a happy holiday season and have now broken most of your New Year’s resolutions, except the ones about staying healthy and being careful on the ice and snow.
During the last few months several articles on traveling with a disability have crossed my desk. Here are a few key topics to research if you plan to travel.
We continue to hear about ride sharing companies like Uber, Lift, etc. At the present time these companies have zero vehicles that can accommodate a wheelchair or scooter. They depend of the regular taxi companies to provide these vans. You often have to request a van 24 hours in advance.
If you are looking to rent a vacation house for a few weeks, you need to do your research as Airbnb lists accessible houses, but often they are not wheel-chair accessible. Many bathroom doors are too narrow to accommodate a wheelchair.
Although cruise ships seem the easiest, you need to reserve a handicapped room that is larger and has grab bars in the bathroom.
In the Spring of 2017 I was contacted by a columnist that was writing about polio survivors that continue to live in an iron lung. I recently saw the article that showed interviews with maybe the last 3 survivors. The manufactures of the iron lungs have been sold and there is no-one responsible to make parts. These survivors depend on small town mechanics to keep the iron lungs working.
Although the Michigan Polio Network is transitioning into Polio Health International on December 1, 2018, we will continue with the Perspectives until that time.
Bruce E. Sachs MA Chairman MPN
With the transition of MPN to PHI I decided to devote this column to outline some of the history of PHI and how we can use their resources to find information on post-polio syndrome.
What is PHI?
For many of us we look at the Warm Spring Conference of 1985 as the starting date of the gathering of post-polio information, but there was considerable post-polio information being shared before that date. In 1958 Gini Laurie becomes editor of Toomeyville Jr. Gazette, the mimeographed newsletter for Toomey Pavilion in Cleveland, Ohio, a respiratory center for poliomyelitis patients. She became the driving force behind the sharing of post-polio information and in 1981 coordinated the first post-polio conference in Chicago.
Followed in 1983 by the Second International Post-Polio Conference and Symposium on Living Independently with Severe Disability, Saint Louis, Missouri. The newsletter’s name was changed to Gazette International Networking Institute, Inc. (GINI).
In 1984 Judith Raymond was hired as first executive director. GINI published “The Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors,” edited by Gini Laurie, Frederick M. Maynard, MD, D. Armin Fischer, MD, and Judith Raymond.
In 1985 the International Polio Network (IPN) was founded and begins publication of Polio Network News.
The Third International Polio and Independent Living Conference was held in Saint Louis. GINI also began publishing the Post-Polio Directory, listing clinics, health professionals and support groups knowledgeable about the late effects of polio.
In 1987 the International Ventilator Users Network (IVUN) was formed and began the publication of the IVUN News.
Judith Raymond Fischer resigns as executive director and Joan L. Headley is hired as director of the International Polio Network. The IPN continued to hold conferences every 2 years in St. Louis.
In 1999 a revised edition of Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors, edited by Frederick M. Maynard, MD, and Joan L. Headley, MS. was published.
In 2003 the name was changed to Post-Polio Health International (PHI) Including International Ventilator Users Network. PHI working in conjunction with the John P. Murtha Neuroscience & Pain Institute at Conemaugh Health System in Johnstown, Pennsylvania, provided monthly conference calls for the Post-Polio Clinic Directors.
Archival materials were loaned to The Smithsonian Institution for the "Whatever Happened to Polio?" exhibit at the National Museum of American History.
Funds were received from Christopher and Dana Reeve Foundation to create a guide to assist ventilator users in surviving emergencies.
In 2007, PHI launched an annual WE’RE STILL HERE! campaign to remind the world that, while polio has been declared eradicated in most places around the globe, polio survivors are still here. They are contributing members of society and active in their communities, taking an active role as civic leaders, teachers, doctors, nurses, lawyers, artists, farmers and elected officials. A post-polio awareness campaign was started, this campaign continues every October.
In 2011 Polio Place was added to the website. Polio Place Explores the past, the present and help build a promising future for the world’s polio survivors. You are invited to learn by searching the major sections and sub-sections and to add your knowledge to help others.
The booklet Health Care Considerations for Families and Friends was published with input from a panel of experts with experience in treating and educating the survivors of polio. They compiled facts and wisdom targeting family members and friends caring for relatives who had polio. Polio survivors and families suggested items to be included in this booklet.
PHI's quarterly newsletter contains current information about the late effects of polio, updates about post-polio related and neuromuscular respiratory research, as well as articles that offer practical and useful advice by experienced survivors and health care
professionals and a monthly on line “Memo to Members.”
The quarterly also contains a column “Ask DR. Maynard” and Conversations on living well with polio and more by Sunny Roller.
For more information go to www.post-polio.org
This article was written using information from the PHI website
Bruce E. Sachs MA
Michigan Polio Network