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NETWORKING
- Resource Directory for Ventilator-Assisted Living
- Community Calendar
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- IVUN's Ventilatory Equipment Exchange
- What Works for Me
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Can You Help?
Send questions and receive answers about
equipment, resources and non-medical concerns.
Submit your request or comments to info@ventusers.org.
Please include the Item Number if you are responding to a listed item.
Also, let us know if we may publish the contact information that you provide.
INDEX ...
Accessibility
Equipment (other than ventilatory)
Job Offers & Needs
Surveys
Travel
Ventilator Use
Ventilator options for people now in iron lungs
Need: Two portable laptop computers
We are conducting a rural pilot project, but we have a problem needing one or two portable laptops to be used in this project. I therefore kindly request you if you can assist us with one or two used laptops to enable us to carry out this project. The computers should preferably be suitable for research purposes, e.g., Pentium II, IV or more. Hilda Tumwebaze, Uganda Rural Health Association, urha@doctor.com
I'm working on a grant with a colleague to help people with disabilities get information about specific sexual concerns. Initially, we are focusing on the sexual concerns of persons with mobility impairments related to post-polio syndrome, stroke, spinal cord injury, multiple sclerosis and cerebral palsy. Unfortunately, the professional literature does not provide much information about how using a ventilator (or having a condition that creates the need for the ventilator) affects sexuality or sexual activity. We would really appreciate any suggestions about: 1) what questions we should ask people who use vents so that we can better understand their sexual concerns; and 2) the types of sexual health information people who use vents might be most interested in. In addition to posting responses to this site, please feel free to contact me directly, or Dr. Kelly Ace, (kelly@kellyace.com), with your comments or suggestions. Thanks in advance for any assistance you can provide. Dr. Mitchell Tepper, Connecticut (mitchtep@aol.com)
Attention Ventilator Users! Assist IVUN in obtaining data that can be used to connect ventilator users more effectively with each other when medical or equipment problems arise or when new users need information and support. Connect here to complete the IVUN Census about your ventilator use.
ITEM BK102, posted 5-06
Loosening commode: Does anyone have a solution for the problem of a raised toilet seat that continually loosens due to use and to the weight of the user? Please respond to info@ventusers.org.
ITEM #BK101, posted 8-04
A special request for books ...
I am just recovering from radiation and surgery for cancer. I am post-polio and the syndrome reacted badly to the treatments, I now cannot walk except with a walker or two canes. The pain can be very bad especially at night. Because of the post-polio syndrome I react badly to most pain medications. I use the computer and books for pain control. I made this request to my favorite joke line and got three responses and a dozen books. I still need books! I can no longer afford to buy them and I read two or three a day. I love romance, history, mysteries, and even westerns and science fiction. I just plain love to read. When I finish the books I pass them on to a senior center. I pick them up when they are finished and take them to a woman's shelter they are well loved and read. Hope you can help. Wanda Dyer, 993 E Michigan Lot 8M, Battle Creek, MI (Michigan) 49014
Response: You might be interested in checking out www.tapeministries.org. They send you books on tape free (would be great for sleepless nights). Also www.loc.gov/nls, the National Library of Congress Service for Blind and Handicapped sends books on tape. Also, have you called your local library? Most offer book deliveries to people who can't get in to the library. Linda, Essexville, MI (ldavison@tm.net)
Response, 9-04: There is a website (http://www.booksfree.com/cds/cd_learnmore.shtml) that offers unlimited borrowing of books and audio books, with free delivery, for three different monthly fees.
Accessibility
ITEM #ACC100, posted 6-04
We are currently renovating our home and need help in making it accessible, especially the kitchen, bathroom, and stairs. Is there a website that will give us the needed info? Are there companies that specialize in selling accessible furnishings such as cabinets, appliances, elevators? Are we looking at a great deal of expense or is there someone who can help us make these changes for a reasonable price? Gail, TN (gaiedesp@mars.utm.edu)
Response: http://www.extension.iastate.edu/pages/housing/uni-design.html, http://www.dynamic-living.com/news-home-accessibility.htm are two resources available on the web.
Surveys
ITEM #SU100
Survey on Use of Medical Equipment
Travel
ITEM TR103, Posted 9-7-06
My TSA Security Screening Nightmare
This letter concerns an incident that I encountered at the San Francisco International Airport on Sunday, August 6, 2006 as I attempted to return home to Philadelphia.
I understand fully the difficult job of keeping our skies safe. I have always cooperated and will always cooperate fully with airport police, security and airline personnel. We all want to be safe while traveling but we each need to be treated fairly and with respect. With that said, the airport security system that The Department of Homeland Security has set in place since 9/11 is inconsistent at best. The rules seem to change daily, and they vary greatly from airport to airport. I am an average American and a law abiding citizen of the United States. I have never been arrested nor have never been convicted of a crime. I am married and have a son. I own a home. I pay my taxes. My husband is a former Captain in the United States Marine Corps. We do not deserve the treatment recently rendered to us by TSA personnel at the San Francisco International Airport!
I am a polio survivor and have been paralyzed since childhood which requires me to wear two long leg braces (KAFOs), walk with the aid of forearm crutches and always use a manual wheelchair whenever I travel. On Wednesday, August 2, 2006, I flew from Philadelphia to San Francisco on USAir with my husband and three (3) other couples on a business-related trip, which was arranged through Allstate Insurance Company, my husband’s employer. When I went through the security checkpoint in Philadelphia a female screener took me aside to manually do a body “pat-down” inspection and also checked my wheelchair. No problem whatsoever! This examination took less than fifteen minutes and there was no problem. This is routine procedure for me whenever I travel; I accept this. The screener couldn’t have been more polite and was very professional. I was treated in a dignified and professional manner and was cleared to proceed to the gate for our departure to San Francisco all in a timely manner.
After our business in San Francisco was completed, we all arrived together by limousine at the San Francisco Airport approximately one hour prior to the departure time of 10:30 a.m. for our five hour flight home to Philadelphia. This is when the nightmare began. At the security checkpoint I was taken aside and told to wait for a female security screener. My crutches and other personal belongings had been taken from me and given to my husband, Bill, to go through the metal detector separately. After being cleared, they were then brought over to a table where I was waiting. Again….all routine procedure and one I’ve come to accept and co-operate with fully. After cooperating fully with a very thorough and complete full body “pat-down” inspection by a female TSA security screener another one was called over to assist. For some reason I was told that they could not “clear” me to fly, nor would they “clear” my wheelchair. When asked why, I was given no reason. They wouldn’t tell me why. This wasn’t making any sense especially after coming through the Philadelphia security checkpoint just days before with absolutely no problem at all! I was then expected to submit to further inspection and examination of my legs and braces, but in order for me to do this I would have to drop my pants! The screeners said that to insure my privacy they would hold a sheet up to prevent onlookers from seeing what was going on! It was at this point I refused. I cannot physically stand and drop my pants while maintaining my precarious balance. Never mind the absurdity of disrobing in the terminal behind a sheet! This was definitely taking their authority to an unnecessary extreme and was not acceptable. I refused to be strip searched! I raised both my pant legs while seated in my wheelchair to reveal the braces I wear on my legs and explained that they continue up each leg to my thigh which they had already felt during the initial “pat-down” search. Apparently this still was not good enough and they would still not “clear” me to fly. I then offered to get up out of the wheelchair so they could do whatever it was they needed to do to “clear” my wheelchair, but to do this I needed my crutches in order to perform this miracle. When I reached to take my crutches off the table, (remember they had already been cleared) the TSA security screener grabbed them from me and threatened to have me arrested for assault! I freely admit that when the screener grabbed my crutches away from me I struggled momentarily with her because I was so upset and those crutches represent my mobility. Subsequently, I sustained a bruise on my arm and trauma to my shoulder from this exchange which has been documented by my physician along with photos. The TSA security officers would not allow me to have my crutches or my handbag because I hadn’t been “cleared” yet.
It was at this time that I was told I could not fly that day! My husband then asked if we were expected to rent a car and drive to Philadelphia. The senior TSA person at San Francisco told us that it might be an alternative solution. My husband, Bill, then asked her if she had the authority to make a common sense decision to clear me to fly. The TSA administrator replied that she had NO authority whatsoever to make any common sense decision.
I needed to use the bathroom before our long flight home, but they refused to allow me to do this until I was cleared. This was getting out of control. This was ridiculous! This was harassment! This was unbelievable! This was discrimination! By the time this horrific ordeal was over I was swelling with outrage and in tears. I had been treated like I was some criminal. Ultimately, if I wanted to be “cleared” to board that airplane for our scheduled flight back home to Philadelphia, I had no choice but to submit to the humiliating and demeaning strip search inspection by yet two more female security officers. At this point they reluctantly agreed to allow the search to be conducted in an adjoining ladies room. I then had to ask for permission to use the bathroom. This was the most humiliating experience I have ever encountered. This is how “the TSA trains their Security Officers to conduct effective, safe, comfortable, dignified and respectful screening at all checkpoints.”
My point in documenting this incident is not to protest the fact that it will take longer to “clear” me any time I fly. My dilemma is that I am not sure I will be cleared to fly at all at the time and date of any scheduled departure. TSA must inform me of exactly what I need to do to be able to fly. To have to conform to a higher standard of security just because I have a disability is clearly a violation of my civil rights. I would be happy to get a doctors certificate, have photos of my braces or do anything reasonable to avoid this situation again. I just need some sort of clarification!
As a US Citizen I fully expect that some clarification of this situation be forthcoming. Unfortunately my expectation is that TSA will not show any improvement in the treatment afforded those who might present a special situation when attempting to navigate the security maze at our airports.
I have emailed this complaint with the TSA and Covenant Aviation Security, Inc. I am also following up with hard copy letters to them plus to the following:
TSA, Office of Civil Rights and Liberties
TSA Office of Privacy Policy & Compliance
Tamara L. Miller, TSA Special Counselor
Senators Barbara Boxer, Arlen Spector and Rick Santorum
Ginny Thornburgh, National Organization on Disability
Aviation Consumer Protection Division
National Council on Disability
Michael Chertoff, Director, California Office of Homeland Security
James F. Powers, Jr., Director, Pennsylvania Office of Homeland Security
Post-Polio Health International
Sincerely, Diane Kirlin Murphy, 414 Glenway Road, Erdenheim, PA 19038
Read TSA's response in Post-Polio Health, Vol. 23, No. 1, Winter 2007
ITEM TR102, posted 2-13-06
www.matchinghouses.com is a new website withover 350 members worldwide, especially popular with wheelchair users in English-speaking countries such as the USA, Australia, New Zealand and the United Kingdom. Providing fully accessible accommodations for travelers with disabilities.
ITEM #TR100, posted 1-04
My husband can't sleep in a regular bed; he uses a lift chair to sleep. I want to plan a vacation but am concerned on how he will be able to sleep. Any ideas? Wilma, Saint Louis, MO (wilmav@mindspring.com)