I just wanted to let everyone know that I did receive a grant from Diebold to have our resource booklet printed. This booklet was compiled by the Stark County chapter of ACB of Ohio. We had 2,000 copies printed in October. We took copies to all the ophthalmologists in Stark County. I also mailed some to people who I had on a list. One lady wrote to me and said the booklet was "Wonderful!" I gave a copy to a parent and she thought it was very helpful.
The doctors haven't had our resource
booklets long enough to let me know how their
patients liked them. I will let you know more in
the next issue. I do have an appointment to be
interviewed about this project on a radio station
on the 2nd of December. I did send press releases
to 3 local papers in late November, but I don't know if these were printed.
Is a person with low vision sighted or blind? Should people with low vision endeavor to function as sighted or as blind? Like most questions of this type it is often too easy to give an over simplified answer. Low vision is low vision. People with this disability are not totally blind but may not have enough vision to function as fully sighted people. Some of the skills of blindness may be useful but they may not be needed. Some of us, depending on our degree of visual loss, have tried to function as sighted people. Perhaps many of us are still trying and have been forced to learn that on many occasions this will not work. As a result we are compelled to conclude that we are not blind as most people think of blindness. Nor are we able to handle many of the demands of life as fully sighted people do.
That is why there is a compelling need to have an organization like CCLVI--a group of people who have low vision that come together to directly address the problems and concerns of people with low vision. There are of course additional sources from which we can learn. These include medicine, education, research and rehabilitation. However no other group fully understands what will work for us or not work for us.
This is why we must continue to work together to make CCLVI a dynamic and challenging organization. Through this Vision Access magazine, through our website, through our chapters and committees, and at our convention each year we must work for a better understanding of what low vision is and provide information that people with low vision need to live full and meaningful lives. As individual members of CCLVI it is our privilege and challenge to reach out to others with limited sight and have them become a part of CCLVI.
CCLVI's Scholar- ship Committee will be accepting applications for three Fred Scheigert Scholarships from January 1, 2009 to midnight on the last day of February, 2009. Find and submit applications online at www.cclvi.org. Make sure your application is complete and that supporting documentation is sent on time. Include a report from your eye care professional.
California Council of Citizens with Low Vision Our chapter held its convention in conjunction with that of the California Council of the Blind last October in Los Angeles. Please refer to summaries of some of the fine Topics addressed at our meetings featured in this issue of Vision Access.
For information about our chapter, call 800-733-2258.Metropolitan Council of Low Vision Individuals with members in New York, New Jersey and New England "Looking Good Looking Close"
In October our Chapter hosted a meeting in Penn Station, a major New York City rail terminal serving Amtrak and two commuter rail lines. Representatives of one of them, the Long Island Railroad, listened to our feedback on the ways the Railroad effectively meets the special needs of vision impaired travelers, and areas where improvement is possible. The rail staff expressed appreciation for the information, which included how to identify the specific name of each of the several primary corridors in Penn Station with signage that will aid low vision readers of large approachable signs, and, the general public too. In that way, members of the public can in turn be more informative when offering assistance.
In November, Chapter President Ken Stewart accepted an invitation from the Head of the Department of Buses in N.Y.C., to take a ride on a sample of the latest bus design being ordered in volume. A system of electronic visual and audible announcements was also demonstrated. The audience receiving the critique included representatives of the company seeking the contract to install the sign system. There will be automated announcements of the sTops in the interior for occupants and the bus route on the exterior for boarding passengers.
For Information about this chapter call 845-986-2955.National Capitol Citizens with Low Vision Our Chapter president, Barbara Milleville, was responsible for planning the program for the second annual Mid Atlantic ACB Affiliates Convention which met last November in Rosslyn, Virginia. Look for summaries of some of the fine presentations at our convention in some of the articles in this issue of Vision Access. More reports will be featured in the next issue of this magazine.
For information about our chapter call 703-645-8716 or email ncclv@yahoo.comOne of my earliest experiences in rehabilitation (or what I defined as rehabilitation at the time) was writing a thesis on the teenage drug abuse problem in public schools of my hometown, Shreveport, Louisiana. I devoted one and a half years of graduate work to this project. In my research I used statistics of national, state and local illegal drug usage among teenagers. My thesis was presented to the mayor of Shreveport. The MADD Foundation used my study as a resource for prevention strategies. When I completed my research thesis, I received a Master of Liberal Arts from Louisiana State University with a major area of study in Communications/ Public Relations. I was a substitute teacher throughout my graduate studies and I continued to substitute teach for another year. My vision deterioration began to interfere with my capabilities as a teacher. In the late 1980's I started an in-home tutoring business. I worked with elementary and middle school-aged children on all subjects. The students' achievements were rewarding to me but my fear of losing eyesight slowly caused me to resign from this work. It took me some time to finally come to terms with my vision problem. As my vision continued to deteriorate, so did my career aspirations. Retinitis Pigmentosa was not only robbing my eyesight but I was allowing it to rob me of my life. I eventually faced reality and reached out to a vocational rehabilitation counselor for help. I enrolled in a rehabilitation center for the blind. This was the most difficult and best decision I have made. I spent several years learning how to gain control of my life again. Previously, I had allowed the fear of blindness lead me through life. My rehabilitation dealt with my fear. I think it is fairly easy for people to say they can teach, lead, or be effective rehabilitation counselors. However, I believe the best teachers, role models, leaders, and counselors are those who have personally experienced the rehabilitation process. This experience in my opinion is my strongest qualification for being privileged to pursue a doctorate in rehabilitation. Rehabilitation is part of my life and it is ongoing, a process. I have examined my life in this narrative and pointed out some highlights. The unspoken is what should probably be emphasized. I explain the positive progression of my academic pursuits. However, before I returned to graduate school, I struggled with despair and fear. I was afraid of blindness and was simply overwhelmed. Great counselors, a rehabilitation program, and a strong will changed my life and enabled me to regain my self-confidence. I have learned adaptive methods available to blind people and am pursuing my lifelong goal-obtaining a Ph.D. The life skills learning process associated with blindness has given me insight into affecting rehabilitation education and leadership. I plan to use my skills, ambition, and abilities to propel my career in the helping profession of rehabilitation work. Career Objectives. Essential among my career objectives is my desire to change the stigma associated with disability specific to blindness. My educational achievements will enable me to act on that desire. In 2000 and 2001, I earned dual Master's degrees in Industrial/ Organizational Psychology and Counseling and Guidance. At Mississippi State University I am now pursuing a Ph.D. in Counseling with a specialization in Rehabilitation and a minor in Public Policy and Administration. These degrees will allow me the privilege and opportunity to serve other people with disabilities, employers and the community.
For me, it is not enough to merely work and be productive as an employee of an organization. I feel it is imperative to encourage people with disabilities by being a role model. Trained as an I/O psychologist, I will work to provide viable vocational options to others. I strategically planned my academic training to encompass two vital areas in effective human resource management--areas that will provide me with the expertise required to design, develop and implement hiring procedures and training programs to effectively integrate people with disabilities into the workforce as productive employees. My completed training in counseling will accentuate the humanistic focus of employee relations. The combination of the two curricula, industrial psychology and rehabilitation counseling, will provide me with the tools needed to understand the challenges facing people with disabilities in employment, and the professional skills necessary to alleviate obstacles to employment. Society is more accepting of evidence supporting a care-giving attitude regarding disabilities rather than viewing the person with a disability as a potential asset to an organization or community. It is unfortunate and inappropriate for industry to further this viewpoint. Labor statistics for the twenty-first century predict a workforce of diversity suggesting that prosperous companies may need assistance in welcoming employees with disabilities since the diversified workforce includes those workers. As part of a Master's degree internship, I designed a guide for prospective employers entitled "Hiring the Blind Worker: An Employer's Handbook." It is my desire to educate leaders in industry so that they can make effective hiring choices that include candidates with disabilities. Upon completion of my Ph.D. in Rehabilitation Counseling with the minor in Public Policy and Administration, I hope to make a difference in disability perceptions and policy.
Additionally, I hope to further employment research of people with disabilities in a rehabilitation/train-ing setting. As principle investigator, I have had manuscripts published in several peer reviewed journals: "Senior Surfing: Computer use, aging, and formal training" (2008) was published in the Association for the Advancement of Computing in Education Journal and, "Effects of Race, Gender and Other Characteristics of Legally Blind Consumers on Homemaker Closure" (2004) was published in the Journal of Rehabilitation. The second article received the 2005 National Rehabilitation Association Job Placement and Development Research Award. In 2003, I coauthored a manuscript entitled "Strategies for Delivery of Equitable VR Services to Minorities with Visual Impairments, An Evaluation of Title 1 State Plans" that was published in the Journal of Rehabilitation Administration. My doctoral research provides an opportunity for me to gain insight into the employment issues for individuals facing personal challenges. Also, my vocational counseling background provides me with the expertise to design and implement employment strategies for people with disabilities. I have parlayed my interest of improving professional VR counselors' effectiveness into research publications as well. In 2005, I co-authored "Are More Tasks More Taxing? Mental Workload Assessment of Certified Rehabilitation Counselors." This article was published in the Vocational Evaluation and Career Assessment Professionals Journal.
Getting the job can be only half the battle; people with disabilities have to make the necessary life adjustments to coincide with their vocation. By working to provide proper education and training in the use of adaptive techniques, I will contribute to disabling the unproductive attitude of "I can't" held by many individuals. Equally, I hope to contribute by disassembling the employment barriers constructed under the same perceptual premise by working to educate industry on the positive performance abilities of workers with disabilities. These are the personal and professional objectives I plan to achieve after completion of my Ph.D. Achievements As a graduate student researcher, I worked as an Anne Sullivan Macy Fellow at the Rehabilitation Research and Training Center on Blindness and Low Vision (RRTC-BLV). In 2007, I was recognized by the American Counseling Association for my pro bono counseling services to Virginia Tech University students. I was awarded the 2006 Personal Achievement Award given by the Rehabilitation Association of Mississippi and was inducted into Phi Kappa Phi national collegiate honor society. I received the 2004 Graduate Student Woman of the Year Award from the President's commission on the Status of Women. In 2003, I was awarded the Mississippi State University College of Education Graduate Research Award. I have obtained licensure in the State of Louisiana as a Licensed Professional Counselor (LPC #2956) and a licensed vocational rehabilitation counselor (LRC #709). I am also a National Certified Counselor (NCC). While at MSU, I have worked as a doctoral supervisor of master's level counseling students and group facilitator in group work courses. Most recently, I have been offered a subcontract with Heritage of America and the U.S. Department of Veterans Affairs to work independently with veterans who have disabilities and want to return to work. I am excited about this new work and look forward to assisting our nation's veterans in fulfilling their career objectives despite any disability they have encountered.
Recent Personal Challenge Beginning in September 2007, I have been dealing with a personal medical issue that has taken precedent over my academic and career objectives. I was diagnosed with stage III breast cancer. I have had a bilateral mastectomy and completed six months of chemotherapy treatments. I am currently undergoing radiation therapy, and hormone treatments. I am pleased to report that my July 14, 2008 PET and CT scans revealed negative results--NO CANCER! I am able and ready to complete my doctorate! I have faced the challenges of blindness during my life and I view this cancer as another challenge that I will deal with just as successfully. This will only make me stronger and more eager to help and serve others who face similar challenges. Through my academic efforts and life experiences, I hope to continue to serve as a positive and accomplished role model for people who are blind.
I was born with limited vision. My vision loss spanned over 28 years. At age 11, my vision got worse. At age 19 when I was sitting in a college classroom, I suddenly saw some blurriness. I called my parents who went with me to my ophthalmologist who said "You have congenital cataracts. I've always known that; but I just assumed the cataracts would never get any worse, so I never mentioned it." But my vision got progressively worse.
At age 27, I had cataract surgery which started out being successful. Then I got glaucoma, which was related to my cataract surgery. For a year my vision fluctuated from better, to worse over and over again. Measuring these changes took over my life for that year. Then all of a sudden there was a huge bleed and I couldn't see anything. I knew that was it. In a way this was a relief even though it was scary. Finally I could adjust to something that wasn't going to change.
But all through those years of losing my vision I went through a lot of anger about losing it, a lot of insecurity. Each time my vision changed, I had to change the way I was doing things.
I remember cooking, and suddenly I couldn't see whether a fourth cup measuring cup was full. I had to use my finger to see that it was full. For a while I got so angry that I didn't cook.
I refused to use a cane for way longer than I should have. This was because whenever I did use a cane, I could see other people looking at it. And that was embarrassing to me. That was pride. I didn't want to be blind, to be that kind of different person.
How has my vision loss affected my profession? Both ways. My colleagues can drive to two or three offices to meet clients. I don't have that option. It's more challenging for me to complete paperwork related to my work. On the other hand, being a clinical psychologist is a talking profession. Talking, communicating, interacting is all pretty easy for me. So my profession has been affected both positively and negatively, but more positive. I've had three people in my whole professional life who came to me, discovered that I was visually impaired, and walked out. But that's a very small number. Many people have said, "I feel I can talk to you more because you can't see me-my weight, my reactions, etc."
I had trouble getting jobs. This is one of the reasons I went into private practice. I did work at a counseling center for a couple of years. That worked out pretty well until they got a new director. He told me that people were ending counseling with me more quickly than from others because of my blindness. I checked it out in the office records, and found it was not true. But that's the kind of discrimination you get sometimes.
The difficulties we have when we face vision loss depend on how our vision is lost, how long it takes, how quickly it goes, what is important to us in life, the things we enjoy most about seeing. It's somewhat different for each one of us. This may be no longer feeling at ease in social situations because we are not getting the information that others have; we can't recognize faces or move closer to someone we want to talk with. Vision loss takes every part of our life and changes it. Often it's the little things that add up.
Is it an advantage to lose your sight gradually? Some people believe this allows time to adapt and learn new skills as well as time for family to adapt to changes. Some people would rather lose their vision quickly.
Here are some coping strategies. Use a support network; don't try to do it alone. If your current friends and family are not supportive, find people who are positive and supportive. This is better than being alone or being discouraged. Look for people at your church or synagogue, clubs, American Council of the Blind and Council of Citizens with Low Vision. If you tend to be shy, some kind of counseling may be helpful.
Block out embarrassment-we can't help it anyway. The more we go out in life, the more we will make mistakes, like interrupting a conversation or talking to someone who has already left the room. We only go through life once, so we may as well do what we want to do. Life is all about losses and gains. The way we handle losses, depends on our personality. Everybody has a story involving frustrations, challenges and losses. Despite our vision loss, we're more like everyone else. Many people don't understand the implications of vision loss. Therefore we can talk to visually impaired people about our struggles with vision loss because they are more likely to understand.
Accepting help from others can actually feel liberating. It can give a sense of solidarity vs. feelings of being autonomous. We can accept our humanity. People need a lot of things from us as we do from them. People feel happier when they are able to help others. We are not hurting others when we need their help; we are giving them a chance to feel happier when they offer us a ride in their car or help us cross a busy street.
We are missing a lot because we are visually impaired. Yet there is so much richness in life; there are so many aspects we can experience despite vision loss. A key factor is our attitude toward life. Do we feel depressed and discouraged? Or can we see life as a skill building, problem solving, enriching experience? Adapting to vision loss is not easy. We have to get past it, go through it. We can all lead very full lives despite vision loss.
The World Institute on Disability (WID) is a nonprofit research, public policy, and advocacy center. This center is dedicated to promoting independence and full economic and societal inclusion of people with disabilities. WID is funded by federal, state and private foundations.
The Access to Assets Project of WID is designed to change economic expectations for people with disabilities. Asset building is an anti-poverty strategy. It seeks to help people invest in assets so that they may be able to either seek self-employment through beginning a small business, purchase a home, or fund further education. This is the first program in the United States to build bridges from poverty to greater economic status for people with disabilities.
This program offers technical assistance, disability out reach, and information and referral in both federal and state arenas. Employment planning, benefit planning and financial planning are areas addressed.
Tom Foley is a tax lawyer who was trained to plan, plot and scheme for his clients who had to face the IRS. He now uses his skills to plan, plot and scheme so that people with disabilities can access assets and gain greater quality of life.
There is a continuum of asset building tools. Leveraging these tools is critical. The first tool is access to good, quality information, especially information to combat the fear of many that seeking even minimal employment will mean that benefits like Supplemental Security Income (SSI) and Medicaid will be taken away. WID has developed a website-DB101.org-on which every question about benefits for Californians is answered. (DB stands for "Disability Benefits.") This website even features a calculator on which an individual recipient can determine detailed answers about his or her benefits.
Another tool vital to asset building is employment. People have to get a job in order to build assets. In California only 5.4 percent of people who receive SSI have any earned income. Similarly in California the number of SSI recipients has recently risen from 6.1 million to 7 million. Employment does not mean going out and immediately getting a full time job. Employment is viewed as a continuum-perhaps beginning with a volunteer position or an internship. These help build resumes and interpersonal connections, and they may lead to part time work and then perhaps full employment.
Once a person is out of the house and working, he or she can access other tools. One of these is the Earned Income Tax Credit, introduced by President Nixon. This plan is intended to motivate people with low income to begin saving money. Under this plan a single individual could receive up to $419 in the current tax year. If this is the first year in which this person is filing taxes, his or her Earned Income Tax Credit can be retroactive for the past 3 years yielding three times $419 or $1257. A couple with 2 children can receive up to $4000 or $12,000 to $13,000 retroactive for 3 years.
WID's Access to Assets encourages people who receive SSI to get into the game by filing tax returns. If they do, they are entitled to economic stimulus payments available only to people who file taxes. People can get help in filing tax returns by contacting VITA-Volunteer Income Tax Assistance Programs.
Federally supported Individual Development Accounts are another important tool to asset building. In these savings accounts every contributed dollar of earned income is matched. In some states like Kentucky the matching is 8 to 1.
Another benefit to having a savings account is that people will save the money they spend in order to cash their benefit checks, usually $40 per check. 50 percent of people who receive SSI have no checking accounts and 75 percent have no savings accounts. So they must pay to cash their checks.
Earned income for people on SSI could come from selling items on eBay, helping people with resumes or with editing, or any other start-up work. Any of these sources qualifies people to apply for an Individual Development Account, IDA. Income deposited in federally funded IDAs is not counted as income for SSI and so will not affect benefits. So if a person makes $200, his or her SSI check will not be changed. In this way money is sheltered from SSI for buying a home, securing more education or starting a small business. Another way to shelter income is to open a custodial account where by a bank or credit union would hold the title to the account for the individual. For more information about IDAs go to www.idanetwork.org.
If a person has $900 earned income tax credit and puts this into an IDA for purchasing a home, with a 3 to 1 match, his or her $900 equals $2700. In 2 years this becomes $5400. This could be used as down payment money. People may also qualify for a Section 8 mortgage voucher. A person with a disability in California could also qualify for a loan for $150,000 at 4 percent interest over 30 years.
First time home buyers can qualify for $50,000 down payment assistance. They are required to repay this loan after 30 years. Using these resources, a person may be able to buy a small house or a condominium for less money per month than paying rent.
To subscribe to WID's newsletter, go to equity@wid.org. For more information from Tom Foley, contact him by email at tom@wid.org.
The Air Carrier Access Act regulations are the primary source of disability access rules for air travel. Air Carrier Access got started in 1986 with a Supreme Court decision that went the wrong way. The Supreme Court said that Section 504 of the Rehab Act didn't apply to air travel because air lines did not get a check from the federal government, despite air traffic control systems and federal subsidies to airports.
Working with unaccustomed speed, only 90 days after the Supreme Court decision, Congress passed the Air Carrier Access Act that requires nondiscrimination on the basis of disability in air travel. Our original Air Carrier Access regulations came out in 1990. All these regulations were in place before Congress passed the ADA. We are 20 years into the implementation of the Air Carrier Access Act. Last year these regulations were updated to add coverage for foreign airlines, to include people who use oxygen and to help people who are hard of hearing.
Here are answers to commonly asked questions.
Anyone with a disability can sit in any seat except in the exit rows. People traveling with a service animal can choose either a bulkhead seat or a nonbulkhead seat. If you are traveling with a reader assistant, you can make sure that that individual sits next to you.
You do not have to agree to use a wheel chair if the person assigned to assist you to get from point A to point B at the airport asks you to do this. The assistance they provide you is required to start at the terminal door and extends through to the gate. It includes help with baggage claim, baggage drop off, using the ticket counter, even a visit to the restroom, and help with carrying carry on baggage if you're not able to do this.
When you have to transfer to another airline, personnel from the carrier you arrive on are responsible for getting you to the connecting gate.
Where do service animals sit? They sit with you unless you are on a very small commuter plane and your large animal would block the aisle.
Connecting service must be provided promptly. Any delay that causes you to miss your flight is a violation.
Is assistive technology included in the baggage allotment? Assistive devices do not count toward your carry on or checked baggage limits. Checked baggage fees do not apply to those items.
Accessible websites: Many airline websites are not fully accessible. The rules specifically say that if a website is not accessible to you, you cannot be charged the extra fee for making a reservation by phone. If there is a discount for using the website, and this website is not accessible to you, the airline must give you that discount.
Federal Aviation Administration rules require a one-on-one safety briefing for any passenger who may need assistance in exiting the plane. This briefing is to be discrete and inconspicuous.
People with disabilities must have the opportunity to pre-board.
If you are involuntarily bumped from a flight, you are compensated at twice the fare up to $800. or half that if you get transportation on the next flight.
Security: You have to go through the same security as everyone else. Electronic assistive devices get the same treatment as lap Tops.
Ticketing Kiosks: Passengers use these if they have no checked baggage so that they don't have to stand in line to obtain their boarding pass. Most of these kiosks are not accessible. The airline has to provide someone to help you use the kiosk or put you at the head of the line.
What happens if there is a problem? Who are you going to call? The Complaint Resolution Officer, CRO, is the person you ask to speak to if you have a complaint concerning the accessibility of a flight. Every airline is required to have a CRO available either in person or by phone at the airport from which they operate. The CRO is the airline's in house expert on accessibility. If the CRO doesn't help you, you can and should file a written complaint with the air carrier and the Department of Transportation. The Air Carrier Access Act program is the best resource and the most successful civil rights enforcement program in the Department of Transportation.
On weekdays from 7am to 5pm you can call a hotline-800-778-4838. At other times call 202-366-2220, a regular phone line where you can leave a voice mail. My phone number is 202-366-9310. Finally there is a website www. airconsumer.ost.dot.gov. This website has a wealth of information about this program. We have rules, we have means of enforcing them, we have the staff dedicated to deal with problems that occur.
In order to resolve the problem of pedestrian safety and quiet cars, objective and independent research is needed from different sources. This research is to be aimed at developing some kind of audible signal to alert pedestrians of the presence of quiet cars.
The National Safety Transportation Administration held a hearing on June 23, 2008 to determine if pedestrian safety and quiet cars is indeed an issue. Stake holders attended this meeting. Represent- atives of the blindness community, of academia, orientation and mobility instructors, automotive manufacturers, the Environmental Protection Agency and the Department of Transportation all presented their points of view. The American Council of the Blind and the National Federation of the Blind are both in agreement that quiet cars present a threat to the safety of pedestrians.
Now a federal bill is needed so that the National Safety Transportation Administration does something besides study this matter to death.
People who purchase and drive Prius and other hybrids seem more aware of pedestrian safety, but this is not enough. There is so little data recording conflicts between pedestrians and motorists. Unless there is a serious injury, the police and witnesses are not involved. Therefore records are not kept. There are more records for traffic conflicts involving pets than people. Data involving pedestrians would certainly motivate the need for action to reduce the hazards of quiet cars.
What's in a name? Or, better yet, what's in a term? To people with disabilities, using improper terminology can be as insulting as deliberately mispronouncing their names.
"Everyone should strive to make sure they're using the appropriate terminology because it makes a difference in terms of stigma and how the world views people with disabilities," says Curt Decker, executive director of the National Disability Rights Network.
Stigma, prejudice and stereotypes are a three-headed monster that makes it too easy to see a person's difference negatively rather than positively. People with disabilities are stigmatized or labeled as not being able to accomplish as much as someone who does not have a disability, which leads to prejudice against hiring people with disabilities. The label couldn't be further from the truth: According to facts culled by the United Nations, people with disabilities in the U.S. work force have higher retention rates, equal or higher performance ratings, and less absenteeism or lateness than workers without disabilities.
To help head off such stereotypes, employers must be hyper-aware of ensuring that their employees know the proper way to refer to people in all underrepresented groups, such as people with disabilities.
When speaking about a person with a disability, "you should always refer to the person first," and not the disability, says Decker. Don't refer to a person with a disability as "that disabled person" or "that blind woman" or "that amputee." Instead, say, for example, "that person who is blind."
By putting the "person" before the disability, the disability does not define the person, says Nancy Starnes, chairman and president of the National Organization on Disability.
When referencing a person who has a disability, start with the phrase "People with ..." because saying "people with a disability" or "people with a hearing impairment" implies that they are not being defined solely by their disability.
Starnes notes there are 54 million Americans who have a disability, many of whom have hidden disabilities. In a corporate setting where a person's background or current state in life is not always known, it is best to use the proper terminology and phrasing to ensure people do not misconstrue what is being said.
Respect is shown by referring to people in the manner in which they want to be referred, especially when referencing a traditionally underrepresented group. People with disabilities are also extremely diverse, representing every racial, ethnic and gender group. Because people with disabilities are not monolithic, each individual might have a different idea of how he or she wants his or her disability referenced.
Within the blind community, for example, some people prefer the term "visually impaired" or "a person with a visual impairment." But the National Federation of the Blind (NFB) says people who cannot see should simply call themselves blind.
"It's not something to be ashamed of," says Chris Danielsen, public-relations specialist for NFB.
NFB reasons that when a blind person does not want to be called blind, the word and physical state of not being able to see is enveloped in a negative connotation. Using euphemisms for a state of being that "means nothing more or less than ... not being able to see with your eyes ... makes the negative connotations associated with being blind worse," says Danielsen. "A lot of people want to use 'visually impaired,' but we believe that is unnecessary."
Decker points out that terms and labels come and go as a community's power develops and people become more aware of the community and its issues.
"Modernism comes along and terms once acceptable are not acceptable," says Decker. "The general public must stay on Top of the most appropriate name. For example, we used to say 'mental retardation,' but we're now using 'developmental disabilities.'"
Starnes remembers when terms "handicapped," "handi-abled," and "differently abled" were in use.
"The term 'people with disabilities' is probably the safest because it is incorporated into the civil-rights legislation that covers people with disabilities," says Starnes. "But that doesn't mean every person you meet will be happy with the term."
People who want to be safe and sensitive should simply ask a person with a disability what terminology makes them most comfortable when their disability is being referenced, adds Starnes.
"So if you know someone has a disability, ask, 'How do I describe your disability or address you when talking about your disability?' You'll get a number of different answers," says Starnes, but you will know how to best represent your friend, family member or coworker who has a disability.
Are you a woman living with breast cancer? Would you like to be part of a caring community who understands your unique experience as a woman with vision loss, also dealing with cancer? The ACB Women's Concerns Committee is sponsoring a support group for you, by phone.
Meetings will normally be scheduled on the first Tuesday of each month, from 5:30 to 7 p.m., Pacific time, 8:30 Eastern, on a toll-free conference call number. But the first meeting will be held on Tuesday, December 16, 2008, at 5:30, Pacific time. This group will not give any medical advice, or provide therapy. It will foster a safe and positive atmosphere in which to discuss relevant issues and support one another. If you are interested, please read on, for instructions on how to access the conference call for the group.
To attend the breast cancer support group for women, call the following toll-free number, 866 633-8638, then put in the group identification number spelling the word support. That is, 7877678. If you have any trouble using this number, please do not use 0, but instead, hang up and call this number, 650 969-3155 for assistance. When calling, you must verbally identify yourself and your city location when prompted by the system, in order to further ensure confidentiality and so that we know who is on the conference call. The group is scheduled from 5:30 to 7 p.m., Pacific time, on the first Tuesday evening of the month. The first meeting, however, will be held on Tuesday, December 16th, also at 5:30, Pacific. The next meeting will be held January 6th. We ask and expect everyone who attends group to observe strict confidentiality for anything discussed during group, so that everyone can feel comfortable sharing what they choose to. This group is being facilitated by three social workers who are volunteering their services and who are also ACB members. We anticipate that this group will be an uplifting experience for all and look forward to seeing you by phone.
Without light there is no vision. Light is the most critical element in vision. Photoreceptor cells in the inside surface of the eye, the retina, convert light into electrical signals that are processed by the brain. When people suffer from eye diseases such as macular degeneration, diabetic retinopathy, retinitis pigmentosa, and optic nerve disease, the information sent by the eyes to the brain is altered. Fortunately, for most people with low vision, adjustments to the lighting can significantly improve visual function. In some cases, increasing the lighting can help people to read, write, and perform detailed tasks while in other situations, changing the light bulbs can reduce the glare and improve visual comfort. One of the most common mistakes patients with low vision do is they install 150-watt incandescent light bulbs in the ceiling and remove the cover. Although the bulb may be brighter, the removal of the cover causes glare and the distance between the light and the reading material is too far for effective reading.
What is light?Light consists of small packets of electromagnetic radiation called photons. Photons travel in a wave pattern and the length of the wave determines what type of light is produced. The shortest wavelength of light is called ultraviolet radiation and is not visible by the human eye. Successively longer wavelengths of energy produce blue, green, yellow, orange, and red light. These wavelengths of light are called the visible spectrum because the human eye sees these wavelengths. When each of these colors is present together, it produces white light, such as the light produced by light bulbs. Photons that travel in longer wavelengths than visible light produce non-visible infrared radiation.
What types of light are available?There are primarily two main categories of light. Natural light from the sun and artificial light from light bulbs. Many people with low vision report that they are able to read small print when they read outdoors under direct sunlight. This is because the brightness of the sun enhances vision for many people with low vision. The use of natural light to illuminate your home, office, or school can be extremely helpful. In areas where there is not sufficient natural light, artificial light must be produced by light bulbs. Today, there are many different types of light bulbs, each which require a unique fixture. The most common type of light bulb is an ordinary incandescent light bulb. These are very popular because most table lamps and light sockets will use incandescent bulbs with a screw-in base. They generally produce a reddish-white light but they use a lot of energy and become very hot. Compact fluorescent light bulbs are replacing the conventional light bulb because fluorescent bulbs produce more light, use less energy, and they do not become hot. Low voltage halogen bulbs are another very effective type of bulb that produces a very bright light and they render colors accurately, making them excellent for use when painting, sewing, and reading. L.E.D. (Light emitting diodes) are also becoming more popular for use in table lamps and reading lamps because they use very little energy, last a long time, and they do not produce much heat.
Why do some lights produce a different color? What color bulb is best?Light bulbs produce photons of different wavelengths and colors. Together, they generate a white light. However, in some bulbs, there may be more red photons and the light may appear reddish. Other bulbs may produce more blue and the light may have a blue tint to it. The color of the whitish light can affect how people with low vision see. For example, some people with low vision will prefer a light that produces a reddish-white light; similar to that of an ordinary incandescent light bulb while others will prefer a cool fluorescent light with a bluish-white color. People who have corneal disease, cataracts, vitreous hemorrhages due to diabetic retinopathy, and retinopathy are bothered by lights that generate too much blue light because blue tends to scatter more in the eye, causing glare. Low vision optometrists and ophthalmologists will test color vision, glare sensitivity, contrast vision, and inspect the tissues of the eye to determine what color light is best for each patient.
In addition to the color of the light, it is very important to know how bright the light should be to maximize vision. Some people with retinitis pigmentosa and glaucoma may prefer a very bright light while people with macular degeneration and diabetic retinopathy may prefer a dimmer light for their living room. Similarly, some people with optic nerve disease can read best when using a bright desk lamp while others with albinism and aniridia will prefer to read without the use of a desk lamp. Thus, the brightness and color of the light must be determined for general lighting as well as task lighting by the eye doctor.
Does light damage the photoreceptors, and is bluelight going to be worse for people who have RP? For years, scientists and researchers have studied the effects of light on the tissues of the retina. In animal studies, it has been shown that ultraviolet and blue wavelengths of light can cause cataracts and damage the cells of the retina. In the 1980's, it was hypothesized that light accelerates the loss of vision among people with retinitis pigmentosa, a progressive retinal degenerative disease. To test this hypothesis, subjects were fit with a contact lens only in one eye to prevent light from entering the eye. The results of this study revealed that there was no difference between the eyes exposed to light as compared to the eyes that were protected from light. This study put people with RP at ease because many people with RP during this time were afraid to expose their eyes to light for the fear that it would promote the loss of their vision. Many would avoid going outdoors, they kept their lights off in their home, and they avoided fluorescent light. Today, many doctors continue to recommend that all people with retinitis pigmentosa, macular degeneration, and other retinal problems protect their eyes from the ultraviolet radiation and blue light. On the other hand, there are many eye doctors and researchers who do not feel that blue light emitted from fluorescent lights promote blindness. They argue that the intensity of light from light bulbs is minimal and 8 hours of exposure to fluorescent light is equivalent to one minute in the sunlight. Fortunately, the retina is protected from ultraviolet and blue radiation by the cornea and the internal crystalline lens of the eye. These tissues filter the ultraviolet light and the crystalline lens filters the blue light. Only those people who have had the crystalline lens removed during cataract surgery do not have the natural lens to protect the retina from blue light. For these people, an implant lens that filters the blue and ultraviolet radiation should be implanted. In addition, low vision optometrists and ophthalmologists can prescribe glasses that will filter these wavelengths of light to provide maximal protection.
What types of light bulbs are best for people with low vision?There is no one single type of light bulb that is best for all people with low vision. Depending on the eye condition, incandescent, halogen, fluorescent, or L.E.D. bulbs may be best. Conventional incandescent light bulbs are being replaced with compact fluorescent light bulbs because these bulbs use less energy and last up to three times longer. Compact fluorescent bulbs are available in different colors and brightness and are excellent for providing general lighting in the living room, bedroom, and dens. Low voltage halogen bulbs are gaining popularity because they produce a very bright light and are also available in different colors. These bulbs are great when used in track lights to illuminate work areas in the kitchen or study. L.E.D. bulbs are excellent for reading desk lamps because they produce a bright white light without generating too much heat.
How Do I Select A Light Bulb?When shopping for a light bulb, it is helpful to read the label on the box and choose a bulb that has the brightness, color, and energy efficiency that is best for you. The first thing to look for is the brightness. Lumens is the term used to describe the brightness of a bulb. A bulb that has more lumens puts out more light than a bulb with less lumens. By comparing the lumens produced by different bulbs, one can determine which bulb is brighter. Wattage is the term that describes how much electricity the bulb uses. For people who have RP or glaucoma and keep their lights on all day, it is important to use bulbs that use less electricity or wattage. The compact fluorescent light bulb or a fluorescent light will be much more affordable to use than ordinary incandescent light bulbs. The color of the bulb is another important feature to look at. The temperature, measured in degrees Kelvin, describes the color of a bulb. A bulb labeled with a temperature of 2700 Kelvin produces a reddish-white light and is similar to the color produced by an ordinary incandescent light bulb. 3500 degrees Kelvin is a more neutral yellow-white color and is one of the more popular color lights. 4100 degrees produces a greenish-white color and has a cooler appearance while bulbs with a temperature of 5000 degrees Kelvin and above produce a bluer light and are called full spectrum. Although manufacturers report that full spectrum lights replicate sunlight, they do not and some researchers feel that full spectrum lights can accelerate damage to the retinal cells. However, the FDA has not taken full spectrum lights off of the market and many people with low vision report that they can see better when using these bulbs.
What recommendations can you give on specific lighting?To maximize the use of vision, it is helpful to use different types of light fixtures and bulbs for different types of lighting. General lighting is the type of lighting used to provide sufficient light to walk safely and locate objects at home or at the office. Accent lighting is used to highlight pictures, paintings or furniture in a room while task lighting is the type of lighting used for reading, cooking, or performing specific tasks. Here are some basic recommendations regarding lighting.
For more information on Lighting and Vision, go to www.Airsla.org and listen to the pod cast "What's New in Low Vision: Lighting and Vision.
The number of vision impaired baby boomers is expected to double within the next three decades according to a new report from Prevent Blindness America and the National Eye Institute. Women may be hardest hit. They account for two thirds of the 3.6 million Americans 40 and older currently experiencing vision impairment.
Many eye diseases have few or no early warning signs making regular eye exams imperative. Everyone should follow precautionary measures proven to protect eyesight including wearing sun glasses, not smoking, eating an antioxidant rich diet, and being physically active. Below I'll discuss some recent developments that warrant a closer look.
Diet and AMD: Age related macular degeneration (AMD), a painless disorder that gradually affects central vision is the number one cause of vision loss of people over 60. A new analysis of nine studies of almost 90,000 people found that eating fish at least twice a week cut the risk of developing AMD. DHA, the omega 3 fatty acid present in cell membranes is highly concentrated in the retina and vital to eye health. Plus a 2007 study suggests that people with high glycemic diets are at greater risk of AMD. So limit quick digesting carbs such as foods made with flour and sugar. And if you have AMD, taking a specific formula of antioxidants and zinc called the AREDS (Age Related Eye Diseases) formula can slow the disease's progress- ion. A recent study of 332 AMD patients found that one third were either not taking the supplement or not using correct dosages. An ophthalmologist can advise you if an AREDS based supplement would be right for you.
LASIK concerns: Laser Assisted In-situ Keratomileusis in which the clear cover of the eye is cut and lifted in order to reshape the cornea and correct vision is generally quite safe. Yet it's not without risk. And recent hearings by the FDA have given voice to those with rare complications that might have been prevented if patients were properly screened. This magnifies the importance of reading the fine print before having LASIK.
Be sure your surgery is done by an expert and is indicated for your eye problems. For example, you may not be a good candidate if your cornea is too thin, suffer eye dryness, or if you wear bifocals. Patients who have experienced complications after LASIK can report them to the FDA. Call 800-FDA-1088.
Preheat oven to 375 degrees. In a large mixing bowl combine flour, sugar, orange peel, baking soda and baking powder. Set this aside.
In a separate large mixing bowl, combine pumpkin, eggs, and oil, stirring until blended. Add pumpkin mixture to flour mixture and stir until moistened. Add currants and walnuts and stir to combine
Spray an 8 1/2 x 4 1/2 x 2 1/2-inch nonstick loaf pan with nonstick cooking spray and transfer batter to pan. Bake in middle of center oven rack for 50 minutes until golden and a toothpick inserted in center comes out dry. Set pan on wire rack and let cool. 12 servings.
Note: When you eat an orange, remove the zest from orange before you peel it and store zest in a small jar in your freezer until you need it for this or any other recipe.Gordana Cvijic has written and published a book, "Seeing in the Darkness." In this book she tells the story of her 18 year old daughter Maria and the struggles and efforts to save and improve her life.
Maria was born prematurely with many health issues and Gordana wanted to share her story with all parents who care for children who have disabilities and who may feel hopeless, discouraged and afraid of the future.
"Seeing in the Darkness" is available through Amazon.com. It may soon be available in alternative formats. A part of the proceeds of every book sold will be donated to the Florida School for the Deaf and the Blind where Maria attends school and also to the Lighthouse of Central Florida. Visit www.Gordanabook.com-link to "Seeing in the Darkness."
Brian Higgins has established a new research organization, Intellisight, in Los Altos, California. His organization is conducting research that will produce a mobility device for people who are blind, seeing impaired, no longer independent because of aging. He maintains that technology has reached a point where we can provide people with a high tech mobility device. Brian and his organization are working with GPS, ultrasonic sensors, an electronic compass, infrared laser sensor, and video streaming.
Brian Higgins has retinitis pigmentosa. He is a blind rehabilitation specialist at the Veteran's Administration Health Care System at Palo Alto, California. He now bikes to work every day collecting data for this research project. He is learning how to deal with side roads, road objects, traffic lights, curbs, holes, stationary objects and moving objects. He wants to attain clear path detection.
Brian started out riding his bike with two ultrasonic sensors and the Trekker GPS. His immediate goal is to outfit a Segway with sensors and GPS for people who are visually impaired and for the elderly who are no longer able to drive a car.
Using a process called dynamic stabilization, the Segway HT works with human equilibrium and responds to movements; lean forward and the HT will accelerate, tilt backward and it will come to a sTop. You can also perform full turns, achieve speeds of up to 12.5 miles per hour, and get up to 17 miles out of a single charge.
The first HT model weighs 80 pounds and has a 250-pound passenger payload (future versions are expected to support over 300 pounds). It also features an adjustable control shaft, Intelligent Key technology (a private code which starts and locks your HT), an eight-inch-high platform, silica wheels (each with an independent, emission-free engine), and, perhaps most importantly, five gyroscopes and two tilt sensors which work together to ensure balance and safety on varying terrains. For more information about segway go to www.segway.com.