AMPUTEE SUPPORT GROUP OF NORTHERN VIRGINIA NEWSLETTER
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Monthly Meetings: |
First Tuesday of every month,
7:30-9:00 pm, Telestar Court Building, Gemini room, 2990 Telestar Court,
Falls Church, Virginia 22042 |
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Contacts: |
Daphne Burroughs, 703-369-2615 |
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Web Page: |
www.inova.org/rehabilitation/amputee_support.htm |
The Amputee Support Group
of Northern Virginia (ASGNVA) held it's regularly scheduled meeting on November
2, 2004, at 7:30, at the Telestar Building in Falls Church, Virginia.
Once again, very few people attended the meeting even though we had an advertised
speaker.
Mike Vogt, formerly of Prosthetic Solutions,
gave us a great "Show and Tell" presentation. He showed us
various prosthetic parts and explained their features and the downsides of each
item. Then we got to pass items around and play with them. It was
all very interesting and everybody asked lots of questions. Thanks, Mike,
for taking the time to give us this presentation. It was very informative
for those of us that attended the meeting.
We also received our Tupperware orders at the
November meeting. ASGNVA made a grand total of $42.90 on the Tupperware
fundraiser - mostly due to the fact that only about six people placed
orders. If you ask me, that's a pretty poor showing for a 150+ member
group but then maybe the rest of you are just going to donate $10 to Fund 352
at the INOVA Foundation instead of participating in fundraising
activities.
And it was noticed again, and voiced by more
than one person, that almost none of our associate (professional) members
attended the meeting even though it was noted in our last newsletter that
we were missing their presence. The only "professionals" that
seem to assist the group are the Nascott group - Jason Bulger and Charlie Crone
- who attend on a regular basis and were in attendance at the November
meeting. Once again, our sponsor, INOVA Fairfax Hospital,
Rehabilitation Center, had no representatives at the meeting, nor have they
participated in any meetings since October 2003 when we held the last
Watermelon Social. I have received no communications from Dr. Shin, head
of the Rehabilitation Center at Inova Fairfax Hospital, regarding the role that
INOVA would like to provide to the members of the Amputee Support Group of
Northern Virginia or about speaking to us about the role of the physiatrist in
the rehabilitation process as well as the "steps" an amputee takes
through the rehabilitation process, including your perception of the new
amputee's benefits of joining a support group and why he would advise a new
amputee to join a support group. Again, we need to have someone from both
INOVA and ASGNVA to work together to plan events and coordinate
efforts for any new amputees that are seen by the INOVA Rehabilitation
Centers. Any regular members (amputees) want to take this task on?
News and Announcements
[World News]: Washington, Nov 17 : It can well prove to a small step for Playboy, but a giant leap for mankind.
According to New York Daily News, the 25-year-old amputee model, Jennifer Krum, feels she will send a strong message to all the girls like her when she reveals all for a playboy.com pictorial tomorrow, during a photo shoot in Chicago. Krum, who lost her left hand and forearm in a car accident when she was four, was discovered by the magazine after she won Howard Stern's "Miss Amputee 2004" contest last week.
"If I was an able-bodied, all-of-my-limbs girl, I don't know if I'd do it...I'm doing it mainly because I want to send the message to people who are amputees, or have issues with confidence or don't find themselves attractive or sexy - that you can be attractive or sexy, even if you're an amputee," she said.
"They heard the broadcast and called Howard after they saw my pictures online. It says a lot about Playboy," she added. "They're sending a huge, positive message. They're saying they don't mind. It's a completely awesome thing around for everyone involved."
Yesterday, Playboy.com's editor in chief, John D. Thomas, told Lowdown: "She's a very attractive woman. We would not be taking the pictures if she weren't. (ANI)
U.S. Surgeon
General's Family History Initiative
Surgeon General Richard H. Carmona wants you
to gather some information for yourself this month - he has launched the Surgeon General's Family History
Initiative and declared Thanksgiving 2004 to be the first annual National
Family History Day. Whenever families gather, the Surgeon General encourages
them to talk about, and to write down, the health problems that seem to run in
their family. Tracing the illnesses suffered by your parents, grandparents, and
other blood relatives can help predict the disorders for which you may be at
risk and spur action to keep you and your family healthy.
Because family health history is such a powerful screening tool, the Surgeon General has created a new computerized tool to help make it fun and easy for anyone to create a sophisticated portrait of his or her family's health. This new tool, called "My Family Health Portrait," can be downloaded for free and installed on your own computer. The tool will help you organize your family tree and help you identify common diseases that may run in your family. (You can download a printable copy and use good old-fashioned paper and pencil, too!)
Amputee Coalition of America Adds Easy To Read Materials to
Website 
With ACA's audience being one of rich diversity, the need to present educational materials in multiple formats - to reach and address the specific concerns and needs of its audience - is apparent. To do this, the ACA has created the Easy Read Materials Web page http://www.amputee-coalition.org/nllic_easyread.asp, which presents many of ACA's educational materials in two distinct formats: Easy Read and Large-Print materials.
Easy Read materials are rewrites of original ACA material, revised to 8th grade level, to ensure that all people, despite reading or comprehension levels, can read and understand the information. The new Easy Read versions are more concise, less detailed, and easier to comprehend, while maintaining the information presented in the standard versions. They are also presented in 14 point font instead of the standard 12 point font with more bulleting and white space utilized in the layout and design.
Large-Print materials are reproductions of standard fact sheets and inMotion/First Step articles-reproduced word for word. The only difference is that the materials are presented in a 16 point font instead of the standard 12 point font for people with vision problems. For more information regarding these and other issues, please visit the ACA Web site at http://www.amputee-coalition.org/nllic_easyread.asp or contact an ACA information specialist for further details.Amputee Coalition of America
Increases its Multicultural Outreach Efforts with New Publication
With the goal of reaching out to every amputee, regardless of race or ethnicity, the Amputee Coalition of America (ACA) recently published Connections: The Amputee Coalition of America's Multicultural Publication. This 32-page publication of the ACA's Multicultural Outreach Program has been written specifically to inform individuals, families, and healthcare providers about one of the most alarming health crises today: the increase in people who have diabetes and the serious complications - including dysvascular disease and amputation - that can result from it. In fact, diabetes is the leading cause of nontraumatic amputations in the United States, with more than 60 percent of lower-limb amputations being attributed to it.
Through Connections, the ACA is attempting to reach out to three populations at especially high risk for these problems: African Americans, Hispanic/Latino Americans, and American Indians. Connections provides the facts about the incidence of diabetes, dysvascular disease, and amputation for each of these groups and discusses ways that people can prevent them or at least minimize their consequences.
It is estimated, for example, that 84 percent of all amputations done as a result of diabetes complications might be avoided. "We are excited about this new publication," says Katherine Sluder, MIS, ACA's Multicultural Outreach Coordinator. "We hope hospitals, doctors, prosthetists, and other healthcare providers will give Connections to their patients to spread the word about this devastating crisis and how to overcome it through prevention."
Complimentary copies of Connections may be ordered from the ACA by calling Katherine Sluder at 888/267-5669, ext. 8136, or by e-mailing her at ksluder@amputee-coalition.org.ACA Moves Forward With Access to
Care and Health Promotion Initiative:
New Prosthetic Parity Reference Page on ACA Web Site
After identifying access to care and health promotion as the two most important concerns among people with limb loss, the Amputee Coalition of America (ACA) has given priority to its Access to Care and Health Promotion Initiative - an initiative that closely allies the ACA with state-specific advocacy and action groups seeking to attain new legislative mandates that will secure appropriate levels of insurance coverage for rehabilitative care, prostheses and prosthetic repair.
“The idea is to encourage these grassroots organizations by showing our support and offering them information and instruction on how to rally the support needed to effect change,” says Leslie Duncan, MLS, ACA manager of government relations.
Now available at www.amputee-coalition.org/aca_advocacy_stateparity.html, the ACA's Prosthetic Parity Reference Page allows anyone who is interested to view state-specific prosthetic parity legislation that has been passed and mandated, as well as other state-specific prosthetic parity legislation that is currently in the works. “The idea of the new reference page,” Duncan continues, “is to highlight all of the accomplishments made thus far and to show other start-up advocacy groups looking to effect change that the idea of the Access to Care and Health Promotion Initiative can be realized and that new state-specific prosthetic parity legislation can be achieved.”
Unfortunately, cuts in healthcare directly affect people living with limb loss by placing restrictions on the money available for state-level Medicaid programs and imposing limits on appropriate and essential rehabilitative care. Similarly, private insurance companies are placing limits and, in some cases, completely excluding access to essential assistive technologies that offer those with limb loss the opportunity to lead active, healthy and productive lives. Removing these barriers is the essence of our mission.
For more information regarding these and other issues, please visit ACA's Web site at www.amputee-coalition.org/aca_advocacy.html, contact an ACA information specialist, or talk directly to Leslie Duncan to find out how you can make a difference. ASGNVA
Funds/Donations – ASGNVA received donations for the Tupperware
Fundraiser 2004 in the amount of $42.90.
If you enjoy your membership in ASGNVA or just
want to help fund the activities of the Amputee Support Group of Northern
Virginia, please donate. Remember to indicate Fund 352 to
ensure that your donation goes directly to the Amputee Support Group. You
can donate online at https://connect.inova.com/j/inovanet.srt/forms/donation/donatenow.htm. If you don't have internet access, you can
donate by phone or obtain a donation form by calling 703-289-2072.
Services
and Products
ASGNVA Lending Library – Come to a
meeting and borrow a book or see what new handouts are available. Some
new items have been added to the library as described below. If you can't
attend a meeting, but would like to borrow a book or would like a copy of a
document, contact Beth Harris or Jason Bulger (see contact list at beginning of
newsletter).
What "Fair Housing" Means for People with
Disabilities in Virginia. Virginia Fair Housing Office. A guide for housing
consumers and housing providers.
New
Horizons. Information for the Air Traveler with a Disability. US Department of
Transportation. This guide is designed to offer travelers with
disabilities a brief but authoritative source of information about the Air
Carrier Access rules: the accommodations, facilities, and services that are now
required to be available. It also describes features required by other
regulations designed to make air travel more accessible.
14 CFR Part 382
Nondiscrimination on the Basis of Disability in Air Travel. US Department of
Transportation. Includes amendments issued through July 2003 (e.g.,
includes the amendment on reporting of disability-related consumer
complaints).
A Guide to Disability Rights Laws. US Department of
Justice. This guide provides an overview of Federal civil rights laws that
ensure equal opportunity for people with disabilities.
Americans with
Disabilities Act: ADA Guide for Small Businesses. US Small Business
Administration, Office of Entrepreneurial Development and US Department of
Justice, Civil Rights Division. This guide presents an informal overview
of some basic ADA requirements for small businesses that provide goods or
services to the public.
Member Updates
Member Request - I received an email during the month from an ASGNVA
member and I've looked around the Internet and asked a couple of prosthetists
but to no avail - I can't find Amp-Aid. Does anyone else use it?
Where do you get it? Please help - I can find plenty of references to the
product but no sellers on the net. Here's his email:
I HOPE YOU CAN HELP. WE'VE BEEN LOOKING AND LOOKING FOR
AMP-AID OINTMENT AND HAVE BEEN UNSUCCESSFUL IN LOCATING ANY. IT WAS MADE
BY PEL SUPPLY COMPANY, CLEVELAND, OHIO 44135. WE'VE CALLED THE 800 YELLOW
PAGES DIRECTORY AND FOUND NO LISTING. ANY IDEA WHERE THIS MAY BE
LOCATED....OR, PERHAPS THEY ARE NO LONGER IN BUSINESS AND YOU COULD SUGGEST A
SIMILAR OINTMENT AND WHERE IT MAY BE PURCHASED.
If you have any suggestions
or know where he can purchase Amp-Aid, please contact me so I can let him know
(see Beth, contact list). This is truly one of the most basic functions
of a support group - to facilitate individual independence through a network of
active, informed amputees. Thanks for helping out another amputee - you
already know what it's like.
Scheduled Events
Public Input Session for
Virginia Housing Programs - The
public input session on Virginia housing programs will be held on December 2,
2004, at the Mason District Governmental Center, 6507 Columbia Pike, Annandale.
Virginia Emergency Shelter Grants (ESG) and Housing Opportunities for People
with AIDS (HOPWA) will be discussed from 10:00 a.m. to 12:00 p.m.; the Home
Investment Partnership Program (HOME) will be discussed from 1:00p.m. to 3:00
p.m. Please contact Johnette Mallory-Pullen with questions or for additional
information (Johnette.Mallory-Pullen@dhcd.virginia.gov).
Public Forum on
Rehabilitative Services - The
Virginia Department of Rehabilitative Services will hold a public forum at the
Department of Rehabilitative Services, Fairfax Office, 11150 Main Street, Suite
300, on December 8 from 3:00 - 4:30 pm to seek input regarding vocational
rehabilitation and supported employment services provided to Virginians with
disabilities. Public comment will be used in the development of the
Department's State Plan for Vocational Rehabilitation and Supported Employment.
All of the sites are wheelchair accessible, and sign language interpreters will
be provided for the deaf and hard-of-hearing. If you require any other
reasonable accommodations, or if you need driving directions to any of the
sites, please contact Elizabeth Smith at (804) 662-7071, toll free at (800) 552-5019, TTY at (804) 662-9040 or (800)
464-9950, or by e-mail at smithee@drs.state.va.us.
You may review the 2004-2005 State Plan by visiting the DRS web site at www.vadrs.org.
Monthly
Meeting – The next
monthly meeting is December 7, 2004. I'm hoping to have a guest speaker
at the December meeting. If not, I have two very good videos that I'd
like to show the group if I can get a VCR set up in the meeting room (I'm
working on it).
There was mention of a “holiday” theme at the next meeting since it is our last
meeting prior to the Holiday Season. A few members suggested another pot
luck supper and socialization since the Anniversary pot luck was so much
fun. So, again, for the December meeting, we’ll meet early – 7:00 – so we
don’t starve to death, and have a meal together and socialize. Maybe
we’ll have dinner and a movie – sounds like a date to me. See you there
with your appetites, favorite pot luck dish, and jingle bells on!
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Let all voices be heard |
The smallest voice may have greater |
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For who knows whence genius comes |
Wisdom than the loudest orator |
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American Diabetes
Month |
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2 PLEASE VOTE! Amputee Support Group Meeting of Northern Virginia |
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5 Sami Massous |
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7 National Allied |
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Doug Sloan Fredericksburg Area Amputee Support Team Meeting Winchester Amputee Support Group Meeting |
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16 Washington Amputee Association Meeting |
17 Kernan Hospital Amputee Support Group Meeting |
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21 GERD Awareness Week |
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Ability With Mobility Meeting Canceled |
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Tom Mercer |
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National Drunk and
Drugged Driving (3D) Prevention Month |
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5 National Hand
Washing Awareness Week |
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7 Amputee Support Group Meeting of Northern Virginia |
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9 George Stang |
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Victor Wanner |
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14 Fredericksburg Area Amputee Support Team Meeting Winchester Amputee Support Group Meeting |
15 Kernan Hospital Amputee Support Group Meeting |
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21 Washington Amputee Association Meeting |
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Robert Eichner |
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Pat Brizzi |
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Glen Mowitt |
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30 Ability With Mobility Meeting |
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Ability
With Mobility
– Last Thursday of
the month, 6:00-8:00 pm, 2nd floor, Adventist Rehabilitation Hospital of
Maryland, 9909 Medical Center Dr, Rockville, MD. Contact Sandy Shehadeh,
240-864-6200.
Fredericsksburg Area
Amputee Support Team (FAAST) – 2nd Tuesday of the month, 7:00-9:00 pm, The
disAbility Resource Center, 409 Progress Street, Fredericksburg, VA.
Contact Greg Wright, 540-899-2655 or 800-333-4102.
Kernan Hospital Amputee Support Group – 3rd Wednesday
of the month, 6:00-8:00 pm, Room G604, Kernan Hospital, 2200 Kernan Dr., Gwynn
Oak, MD. Contact Mark Senker at 410-581-7027.
Washington Amputee
Association (WAA) – 3rd
Tuesday of the month, 6:30-8:30 pm, National Rehabilitation Hospital, 102
Irving Street, NW, Washington, DC, Ground Floor Dining Room (rear section, near
the windows and behind the partition). Contact Roy Dwyer (301-897-2816)
or Becky Lehman, RT/NRH, 202-877-1578, rebekahlehman@juno.com.
Winchester Amputee
Support Group –
2nd Tuesday of the month, 5:30-6:30 pm, Conference Room, 2nd
floor, Winchester Rehabilitation Center, 333 W. Cork St, Winchester, VA.
Contact Christie Augustine, 540-536-5113.
Societies have long sought to explain disability. Historically, the two most prevalent viewpoints—that disability is either a moral condition (special or frightening) or a medical condition (a malady to be cured by experts)—have had a profound and mostly negative impact on the lives of people with disabilities. Only recently has a third view of disability emerged: that people with disabilities are regular people, a minority group with the same civil rights as others.
Here we look at the medical/professional view of disability—where it comes from, how it affects the lives of people with disabilities today and what we can do about it.
We start with the premise that the medical/professional viewpoint undermines the basic values of dignity, inclusion and self-determination.
What is the Medical/Professional View?
The
medical/professional view is the false idea that people with disabilities are
broken and need to be fixed by experts. Disability is stereotyped as simply a
“medical condition,” a physical “problem” located in the body. This harmful
attitude gives experts all the power: They supposedly know what’s best
and make the call on how best to fix the patient, or client.
Where Did It Come From?
The
medical/professional view of disability may have started during the European
Renaissance (1200-1500 CE). During that period, a “rebirth” of learning was
taking place. As a part of this growing curiosity, scholars began studying the
anatomy of people with disabilities, hoping to find a cause—and a cure. Before
this time, the most common stereotype had been that disability was a punishment
for sin. Now people with disabilities became stereotyped in a different way: as
objects of study. Over the next 700 years, this scientific approach—the
medical/professional viewpoint—has expanded in three directions. In all three,
disability is a problem to be fixed and experts are in charge.
One thrust has been to find the causes and “cures” of disabilities. For instance, curious “doctors” in the 16th century drilled holes in the heads of people with disabilities (with no anesthetic), hoping to find the nonexistent “fool’s stone,” which they would often pretend to remove. In the 19th century, Dr. Benjamin Rush dreamed up brutal “treatments” such as spinning people at high speeds in special contraptions—a damaging “cure” called “shaking out the madness.” Modern medicine is full of behavior modification plans and drugs to get people to behave more “normally.”
A second path has been research to improve the lives of people with disabilities. Phillip Pinel (1790, France) sought to “treat” and “cure” people through humane living situations and compassionate care, rather than the chains and beatings widely used in his time. Samuel Gridley Howe (1850, America) used new methods of education to give his students the skills to live in the community. Alfred Binet (1900, France) developed the IQ test to identify children who might need extra help in school.
Finally, some professionals have sought to “improve” society by dealing with or getting rid of people with disabilities, who were seen as a burden to society. Social scientists in Europe and America addressed the “problem” by containing people in asylums, poor houses and large institutions—all of which became places of abuse. In the 1800s, “mental defectives” were scapegoated as the source of crime in society. Respectable scientists and professionals called for their imprisonment, deportation and elimination to make society safe. In the early 1900s, many states had laws that enforced sterilization and prohibited marriage of people with disabilities. There were even calls for elimination of these “deviants.”
Isn’t the Medical/Professional Approach Leading to Good Things?
At first glance, the medical/professional viewpoint has fostered research and services that appear to have improved people’s lives. Of course, many of these advances came at the cost of treating people as objects of study. The “objects of study” were not asked whether or not the costs were worth it. It’s also important to remember that research and progress can happen within a disability rights framework. Many professionals are now realizing that progress can only come when people’s dignity is respected, people retain the power of self-determination and the people themselves decide what is needed and use experts as resources to pursue these self-determined goals.
But the problems go deeper than individual attitudes and individual behavior. There is a lot of money at stake in continuing the patient/client stereotype and the imbalance of power. Before you receive any funded services, you have to have a diagnosis. Your provider is strong-armed by medical rules and regulations to be treating you, rehabilitating you, modifying your behavior, making you lose weight, improving you, changing you, making you different in some way. The entire service system is set up to define you as a patient in need of fixing by a paid expert. This viewpoint is so widespread that people tend to think that it’s just “reality.”
The sad part is that many people with disabilities have also accepted the medical/professional view as “reality” and go along with their roles as the objects of professional efforts to change them. Here is what one woman reported: “They give me Skittles for taking my shower in the morning. I don’t know why they started it. It was a staff idea and we just keep doing it. I know it is weird, but it’s what they want to do. The staff and residents are all so used to it that they don’t think twice about how weird it is.”
What Can I Do to Dismantle Its Influence?
The medical/professional viewpoint undermines the basic values of dignity, inclusion and self-determination. We need to expose it, build the skills to recognize it and invite allies and peers to oppose this negative, disempowering attitude at all levels. Only by educating ourselves and acting together can we begin to challenge and overcome the negative power of the medical/professional view of disability.
At the December meeting, we’ll play a quick game of True or False: The Game Show for Self-Advocacy.
Have a Happy and Healthy Thanksgiving!
7:00 DECEMBER 7 MEETING TIME
POT LUCK
and
SOCIALIZING
POT LUCK COORDINATORS:
and
JOCE
GRAHAM, 703-256-0245, JoceGraham@cox.net