Furthering our ability to develop professionally!

Do you ever have difficulty accessing books, journals, oral presentations, continuing education course materials, or the like? Does the specialized software used in your field create accessibility issues for you? Do you have to request assistance to even minimally participate in the professional organizations in your field because the materials, activities, or website aren’t completely accessible, including captioning and security features for registration or contacting the organization? Have you ever had to change jobs or fields because technology was no longer accessible to you or the software would not work with assistive technology? Do you routinely have to pay someone or ask a coworker or friend to scan, read, interpret, or alter information related to your work or professional field so you have access? Have you ever been employed in a disability-related organization because there appeared to be no opportunity for you in your chosen field, even though you had several years of experience doing something else? Have you or someone you know ever had accessibility issues that were a primary factor in any of the following: work at a part-time instead of a full-time position; nine months or more of unemployment; work for less pay or at a lower level than your qualifications merit; dropping out of the labor force; or applying for SSDI? Professional development has moved away from an employer-supported activity toward an individual model. This means that in addition to the many obstacles facing people with a disability in obtaining and maintaining employment, we face another set of issues: Access to the materials and technology to stay relevant, increase our skills, and enrich our own knowledge. Without equal opportunity, the fields in which we can take part will be extremely limited, our opportunities for promotion will be restricted, and our odds of maintaining employment until we reach normal retirement age will decline. If you would like to be part of a web-based group that begins to formulate ideas and take action to address issues such as these, please email us at AccessAge360@gmail.com. We are located in the U.S., but are open to working with professionals in other countries. We may benefit from sharing information and working with international professional organizations. If anyone is proficient in languages other than English and is interested in extending this type of discussion and action to other languages, please let us know. The idea is to increase access for everyone through expanding knowledge about design, alternative text, captioning, and screen readers, advocating for systematic change within and by professional organizations, and helping to shape product design and public policy.

Stories from my Commute: Visitors

Each year about 12 million people visit Boston. They come for all different reasons: the historical sites, the 4th of July with The Pops, shopping, professional reasons, etc. Though these visitors come all year around, the majority are seen between Memorial Day and Labor Day. Fewer students and faculty members are in the city, and many residents flee the city for long Summer weekends. I’m sure the Summertime shifts make the tourists more noticeable walking around and on the T. I was walking through The Commons the other day with a friend, and he said to me, “we’re the only two people in this area not carrying a map; maybe we should get one.” My reply was, it wouldn’t help, and we both laughed. We were not laughing at the confused tourists; we know learning one’s way around Boston isn’t easy. We just know the truth: the map will not help. Maps only help if one knows where one is, and that is the challenge in Boston until one gets a feel for the city. Mostly the visitors from all over the world are great. They ask for directions and give some creative people jobs leading the duck tours. The most amusing visitors are often from other parts in the U.S. like the couple I saw on the train a few days ago. I got on the T and observed this middle-aged couple sitting not far away from where I stood. The woman turned to her male companion, her husband I assume, and said isn’t it amazing how these blind people are riding the train all by themselves. She went on to remark to her husband, and everyone else around her, that a woman with a dog got right on the train without even hesitating. At this point I was mystified, but completely acting as though I did not hear this woman. It seemed easier than trying to formulate a response. What can one say to this type of commentary? I’m certain she didn’t realize her remarks were condescending and reflected far more on her own ignorance than giving credit to those she was observing. It seems socially acceptable to speak about people with a disability in the same way one might speak of a toddler.

Does Age Really Divide?

Generation gaps can exist in the use of language, entertainment, and technology, but the flip side is that generations often care about and take an interest in one another. This intergenerational caring most often occurs in families. For example, my Mom relocated to be closer to her grandchildren. She wanted to help with babysitting and enjoy watching them develop. The interest in intergenerational interaction isn’t just for grandparents. There are a growing number of intergenerational activities proving that age does not itself divide. If people become isolated from others outside their own generation, then it is easy to forget that much can happen when people from different generations come together. Intergenerational learning programs can help young students learn to read, students of all ages learn a new language, and promote health among young and old alike. The Council of the Third Age is working to expand their intergenerational programs, and you can read about the art project between young teens and older adults here http://www.channelnewsasia.com/stories/singaporelocalnews/view/1206008/1/.html The past couple of decades have increased the number of colleges and universities that are connected to retirement communities. A growing number of retired volunteers are adding to the intergenerational mix. Read about Ruth: one example of such a person here http://cvilletomorrow.typepad.com/charlottesville_tomorrow_/2012/06/placemaking-kastenmayer.html Even among advocate groups in the U.S. the solidarity among generations is becoming evident. One recent example is from the organization Our Bodies Ourselves. Though a primary focus of this organization has been promoting public education about menopause, their most recent campaign aims to support information about reproductive rights and access to contraception. The name of the campaign is Our Bodies Our Votes http://ourbodiesourvotes.com/. Check out these photos at http://ourbodiesourvotes.tumblr.com/

Timeout

For those of you who became regular readers of my blog, I apologize for my time away. I work full-time and am trying to finish a doctoral dissertation. To do this for anyone is a challenge but figuring in my disability means my life is pretty much all work and no play. A friend of mine was lamenting the other day that he hadn’t had a vacation in over a year. I was outwardly sympathetic, but inside I didn’t know whether to scream or laugh. My rent just went up 9%, I couldn’t find a more affordable place to live that was accessible to public transportation, and my last vacation was during the previous presidential administration. I did understand my friend’s desire for time away; I often dream of stopping the clock so I can get caught up or escape to a vacation spot. Still, I have it better than many others. During these economically difficult times, we all have had our struggles, but no group of people have struggled more than those living with a disability. We are the largest minority group, the most discriminated against, and the group with the highest unemployment. For those with post-secondary education, it is extremely difficult to find a good-quality job outside the disability field. Don’t misunderstand, the disability field is filled with fulfilling work for many people with and without a disability, but it isn’t a field for every person living with a disability. This “Glass Box effect” for people with disabilities limits their job prospects, often puts their educational background at odds with the jobs they can get hired to do, and perpetuates societal stereotypes about people with disabilities. It also insures that many people with a disability never get a mental break from dealing with disability-related issues like affordable housing, accessible transportation, and managing life with a disability.

The Whole World and Your Place in It

I am continuously frustrated by the absence of disability from discussions of diversity, globalization, and civic/social engagement. I believe part of this is the fears people living without a disability have about becoming ill, having a child who isn’t “healthy”, losing some function like their vision, or becoming frail in their later years. It is generally easier for people to avoid thinking about the things that scare them, so they ignore those living with a disability. I think it is time for people to confront their fears and begin to recognize those living with a disability. If you think disability has nothing to do with you or issues of diversity, globalization, and civic/social engagement, consider these facts: • The largest minority group in the United States and worldwide is people with a disability. • A disabling condition can happen to anyone of any age, race, ethnicity, or wealth. Approximately 650 million people, 10% of the world’s population, live with a disability. • Disability can be the result of an accident/injury, genetic condition, environmental hazard/stress, and/or disease. • People living with a disability are the most at-risk for being abused, a victim of a crime, homeless, unemployed/under employed, socially isolated, and unengaged in civic life. • In the United States alone About 1 in 88 children has been identified with an autism spectrum disorder. • There are about 6.3 million adults in the world living with Parkinsons Disease. • Insufficient research is being conducted with and by people living with a disability; this demographic group is largely ignored. • Access to adequate health care, immunizations, and nutrition, along with attention to public health, education, and workplace safety, can reduce certain forms of disability. • Approximately 80% of people living with a disability reside in a developing country. • In the U.S. and throughout the world, only a small portion of people living with a disability have adequate access to the social support, transportation, life-long learning, technical assistance, care, and assistive technology or supplies they need to be fully included in society. Sources: The Centers for Disease Control Autism and Developmental Disabilities Monitoring Network http://www.cdc.gov/ncbddd/autism/data.html The European Parkinsons Disease Association http://www.parkinsonsawareness.eu.com/en/campaign-literature/prevalence-of-parkinsons-disease/ The United Nations http://www.un.org/en/globalissues/disabilities/index.shtml

Hey, You Took My Spot

We all know that local communities are continuing to feel the fiscal crunch caused by the dealings of high rollers on Wall Street and the crash they caused in 2007. Communities have had to cut back on services and raise fees to cover shortfalls, and for a majority of communities, this bight will continue into the next fiscal year. States Continue to Feel Recession’s Impact — Center on Budget and Policy Priorities States Continue to Feel Recession’s Impact — Center on Budget and Policy Priorities Groups who have been disproportionately affected by cuts are those living with a serious illness or disability. The majority of families who have a disabled child or adults who have an illness or physical condition limiting daily activity are not wealthy. Budget cuts have reduced community-based services for this group of people and their families. At least one community has decided that people requiring a disabled parking spot on city property, even if just outside their home, should be charged a fee. The argument seems to be that those parking spots have to be maintained and larger than all other parking spots, so those that use them should have to pay for them. No other people parking their cars will be charged. See the Steins’ story from Passaic http://www.northjersey.com/news/Disabled_boys_mom_urges_feds_to_abolish_Passaics_new_ordinance_on_handicapped_parking_fees.html Some people hold the view that this charge is deserved, after all, those parking spots are different from all others and have to be marked and supposedly monitored to prevent misuse by the non-disabled. You may be saying to yourself that this is a good point, but is it? Stop and think about why there are disabled parking spots. There are disabled parking spots because a matter of inches can mean the difference between someone getting where they need to go, and being turned away. Years ago when people determined the size of parking spots, they didn’t think about everyone, and instead put a standard in place that not everyone could use. Federal law requires disabled parking in order to protect those who need them from the indifference of others. From what I have observed, these communities would be better off raising the fines on people who misuse disabled parking, and hold them accountable for this abuse by not allowing them to renew car registration, driver’s license, or other state licenses for their business, professional, or personal needs until they’ve paid the fine for the parking violation.

Linda’s Story: Involuntary Retirement Part I

Linda was a good friend of mine. I met her shortly after moving to the Boston area in 2004, and we hit it off. It happens sometimes like that… You just meet someone and you can tell there is a friendship waiting to grow. Linda was always quick to help me out, didn’t mind a last minute meal invitation, listened to my complaints, and she was the best cat sitter ever. Once when a family member was critically ill with cancer, she took care of my beloved pet for three weeks out of 5 when I was away. She drove over to my place twice a day to feed her, talked to her, and gave her some attention. I was so secure in my knowledge that Linda had me covered, that I didn’t worry about my 14 year old pet. How often in life do you end up with such a good friend? Fortunately for me, Linda wasn’t the only invaluable friend I had during this period in my life, but she certainly was a blessing and huge help. A few months after Linda’s cat-care kindness, she began telling me about trouble going on where she worked. She was beginning to realize that her job was not secure. She worked as a lab manager, and sure enough within a few months, she found herself forced out. Linda had been with the company long enough to collect a modest pension, but she was in her early 60s, and not in a financial position to retire. Truthfully, she hadn’t even thought of retiring. Like many people, Linda had done very little toward planning for her future. She was a single woman living south of Boston, so the majority of what she made went right back out in living expenses. At this point if I truly known the extent of Linda’s economic situation, I might have advised her differently; however, we don’t often know much about our friend’s finances. Linda looked for a new job, collected unemployment, and began to look at how she was going to survive once her unemployment benefits ran out. For the first time she started to look toward retirement and explore her pension and Social Security benefits. I knew she’d been with her most recent employer for about 12 years, and I knew a couple of the employers she’d had when she was younger. I started asking questions about the length of time she’d worked for former employers and if she recalled participating in a pension plan. Linda thought she may have had a pension at a couple of them, but she didn’t know the type of pension benefit or anything about their value. She did know she’d never cashed out a pension plan, which was good news. Many people cash out their pension benefits from a 401K when they leave a job, so this money doesn’t gain interest over time. As it became clear that she wasn’t going to find another job, Linda truly had to start asking herself if she could get buy on her pension and Social Security benefits as soon as she was eligible. She contacted one former employer and realized she had a pension in a define benefit pension, but she wasn’t getting anywhere with a third employer. I referred Linda to the Pension Action Center. I knew they helped people track down pensions from companies that had gone out of business or changed hands. Linda felt she needed a bit more information about her rights and the questions she should ask. Sure enough, with information she gained through a call to the Pension Action Center, she learned she had a third pension. It was a very small benefit in a 401K, define contribution plan, but in her case, anything would be helpful. She was able to retire with her benefits and with the help of doing odd jobs and cutting back on expenses. I recall marveling at this situation. Here was a woman who did nothing actively to plan for her retirement, but because of the time period when she’d worked and other decisions she’d made without considering retirement savings, she had enough pension coverage to supplement her Social Security income. If she collected her Social Security retirement benefit as soon as she was eligible, her monthly check would be lower than if she waited until she was 66; however, without a job, she couldn’t get by without Social Security. Employers use to offer more defined benefit pension plans, that provided people with better income security in retirement than today’s 401K pension plans. And because Linda had entered a relatively male-dominated field, she had pension coverage. Men are more likely to have pension coverage than women in large part because of the types of work men and women have traditionally done and because men have been less likely to take time away from paid employment to care for children and other relatives. Linda would have likely had more retirement income had she planned, but she said that financial stuff hadn’t ever interested her. Plus, most of her immediate relatives had died young, so she didn’t ever think she’d live long enough to truly retire. She had no way of knowing that she would lose a job at 61 and be unable to find another position. To learn about The Pension Action Center go to http://www.umb.edu/pensionaction/

Occupational Therapists can help older people with low vision

Have you noticed someone you know struggling to keep things as clean as they once did? Maybe you are noticing other adjustments or changes like difficulty reading or less reading; avoidance of paper work; reduced activities requiring driving or limiting driving to certain times of the day or specific areas; and comments such as things just are not painted, printed or as clear as they used to be. Any of these may be signs that there are changes in your eye health and/or vision. Hopefully you are getting regular eye exams, but if you haven't had one in the last year and notice any of these changes, it is time to stop procrastinating making an appointment. There are a lot more options to deal with changes in vision than previously available. Once you and your doctor have addressed your eye health and prescription lenses, there are additional technologies and services that can help. Among those people who can be helpful are occupational therapists. To learn more about how an occupational therapist may assist someone with low vision visit this link. Therapists can help older people with low vision

Locked Out

We’ve all been there; the moment you realize that you are locked out of your home or car. There is the instant of alarm, and then the fleeting thoughts of the chaos this disruption is creating. Your mind quickly shifts into high gear, and you try to focus on how to solve the problem of getting in and managing the disruption in your day. We all know this is not a pleasant experience to be kept from a destination, yet if we are lucky we manage this situation with a bit of humor and strategy. I often find myself in this situation, though not locked out of physical spaces. Ten years ago, I left my first profession in part because the electronic record keeping systems that were being put in place by organizations were not accessible to me as a person with a visual disability. No one within my organization had any idea about how the system could be made accessible, the company peddling their product had no clue, and no one in the adaptive technology field had ever heard of the system. Just like the person locked out of their home, I panicked at first, but then I decided that my best bet would be to further my education. It was a big financial risk, but one I thought would be worth it. Here I am on the cusp of completing my 4th degree, and I am finding myself locked out again. About three years ago, one of the techno giants acquired a commonly used software package, and while it was pretty accessible at the time, the company has now made changes that make it completely useless to me. Sadly, people in the adaptive technology field know little about this software, so I’m at the mercy of this company or another like it. I’ve seen this company pronounce its commitment to accessibility, now if they would actually do something beyond their public relations division. Maybe one of the other companies with a similar product will step up, and I’ll be able to afford an alternative solution. Books that I need to further my knowledge in my field are not available in alternative formats. Publishers, even though they market their books to educators and libraries, don’t have to make their books accessible. From what I understand, publishers are afraid that people will copy their books illegally if accessible electronic versions are available. Clearly they haven’t heard of scanners and copiers; somehow I don’t think their biggest threat is from those with a visual impairment. Information and technology are moving very quickly, and I’d like to keep up. Sadly people are continuing to insure that I remain locked out, and I am not the only one.

Losses mount from scams targeting older Americans - Boston.com

Losses mount from scams targeting older Americans - Boston.com

David Grary from AP does a wonderful job in this article of describing the growing problem of financial abuse and scams. He provides famous, and not so famous, examples of victims throughout the U.S. He also notes the need for appropriations for the federal Elder Justice Act to help law enforcement prevent financial scams and catch and prosecute perpetrators. If you liked my post "Financial Liberty and Protection," then you will not want to miss this article in the Boston Globe.

The Possibilities of iRobot

Did you see the story in the New York Times about the robot Ava that is being developed? You can find the article by Christopher Drew here: http://www.nytimes.com/2012/03/03/technology/for-irobot-the-future-is-getting-closer.html. The technology being developed by iRobot Corporation and other robotics companies are really amazing. According to the article, Mr. Colin Angle Of iRobot hopes that robots may one day be more actively used within healthcare for remote forms of care and personal assistance and by businessmen for remote meetings and office functions. Personally, I would love it if iRobot were successful, and not because I own stock in their company. Similar to others who grew up watching The Jetsons, I envision using robots one day. My dream is to have a robotic navigational system powered by solar and rechargeable battery that can help me navigate. I would love to be able to program a robot about where I needed to go, and have it help me by insuring I could find the right train or bus, sidewalk, and entrance. The robot would be able to scan to read signs, bus numbers, product labels, price tags and building directories. The robot would walk along with me insuring that I found my way and devising an alternative route if construction or other obstacles got in my way. Imagine the power of a guide, reader, and GPS for a pedestrian and person using public transportation, all combined into a single robot. The best part is this technology could be used for those with visual impairments, but also for those developing cognitive limitations. It could be used to supplement the work of orientation and mobility specialists, physical and occupational therapists, and by those in the hospitality industry. Of course I would like to use a robot at work to perform office functions and to give remote presentations. I would really be happy if a robot could do my laundry complete with ironing and folding, and who wouldn’t want a robot that could mix a favorite cocktail or get that morning cup of coffee… I sure hope iRobot thinks about people of all ages and abilities using these robots and not just being served by them. I want a woman caring for her husband with Alzheimer’s disease to be able to setup one of these robots, even if her computer knowledge is minimal. I use screen reader assistive technology that reads some of what is on a computer screen to me, and I want to program one of these robots. I would like to work with it, not simply be served by a robot someone else has to control. Perhaps an example would help. Microsoft has always thought of accessibility as a secondary concern, and historically has counted on third parties to make their operating system and software accessible. Sadly, because millions of users are an afterthought, many mainstream products have serious limitations, even today. For example, I can read a Power Point presentation someone else creates with a screen reader, but I can’t create my own using screen reader assistive technology. Adobe is no better with their presentation software, Adobe Connect, used for webinars. Adobe made some of the features for the participant accessible, but I can’t create the presentation. Microsoft and Adobe make the same shortsighted assumption that a person using a screen reader will be in the audience, not the person creating and giving the presentation. And this outdated view of technological development is leaving many people with disabilities and people born before the tech boom behind. I hope iRobot becomes a leader in accessibility and inclusion at all levels of their product design. Millions of potential robot users in business and health care settings have a disability or aren’t extremely comfortable with technology. Plus, iRobot is going to be marketing their products to government agencies and health care providers who are required to comply with the ADA. These public entities and healthcare organizations will have to be thinking about accessibility for those they serve and their employees. If robots are truly going to become our personal and professional helpers in the future, I sure hope everyone will be able to work with them.

Stories from my Commute: The Diversity of Kindness

Boston has a real eclectic appeal. In part this is due to the annual influx of people into the area for college and university study. People worldwide are also attracted to work in Boston because of the technical sciences and health care industries. Boston’s history of immigration, ethnic neighborhoods, and present-day diversity representing much of the globe add to the sense of multiculturalism, and provide the variety of sights, sounds, and flavors of the city. While many view this diversity as contributing to an atmosphere of unfriendliness, this doesn’t describe the whole of my experience. Just in the past couple of weeks, I had a woman from Hong Kong, a man from India, a French Canadian woman, and a female and male of Western European descent from New England each offer me assistance. These individuals, not only represented diverse ethnic and racial backgrounds, but a variety of life stages as well. One woman offered to cross a busy intersection with me, which was nice. People with low vision are taught to wait for the parallel traffic to start before crossing an intersection; however, the walk signal doesn’t always correspond exactly with this traffic flow. And besides, in Boston drivers and pedestrians alike don’t always pay much attention to walk signals. In this case, I knew the walk signal was on, but the parallel traffic hadn’t started yet. The woman simply said, “Would you like to cross with me?” Her offer was made with self-assurance that made being on the receiving end of the offer pleasant. A woman I see once in a while on my way home came up, said hello, and provided friendly chat as we walked toward our homes. Her friendliness is not only welcome at the end of a long work day, but allows me to get home with a bit more ease. In one of the other cases, a man asked if he could help me get on the train I needed at Park Street station; I was all set, but the offer was thoughtful. And still another guy let me know there was a baby carriage just inside the door of the train and I should stay to my left. This was a descriptive offer of help for not only me, but also the mother with the cute baby sleeping in the carriage. A final example was a man who approached an intersection where I was waiting to cross, paused beside me, and said you can cross now. These simple words were helpful because it was a crossing with no traffic light. It struck me this week how my disability opens me up to the experience of having brief but friendly interactions with people from a diverse set of backgrounds. These random acts of kindness have proven to be a hallmark of the Boston area and some days a real helping hand. As a bonus, these experiences give a true portrait of immigration in this country, and do not match the negative rhetoric I frequently hear.

Financial Liberty and Protection

Recently I was traveling for work, and ended up sitting by a chatty person on a three hour flight. Normally I would have discouraged a lengthy conversation, but the take-off was delayed and we sat for a while awaiting news about our flight. The woman sitting next to me began telling me a story about her family, which was sadly similar to others I’d heard in the past. In her case, the story involved her father-in-law, some health problems requiring his hospitalization and surgery, and the appearance of a girlfriend. According to my seat mate, her father -in-law had lived alone and kept largely to himself for several years following his wife’s death. After he’d retired, He and his wife had moved to the Southeastern U.S. to escape the Winter weather. He had visited his family for about a month each year, but other than that his kids were unaware of him having any social life. Because of the man’s surgery and postoperative needs, his two adult children arranged their schedules to visit and help with his care. Upon their arrival the adult kids and their respective spouses found that he had a girlfriend, and less than two days before his surgery thousands of dollars had been spent. The adult children were surprised to find very little food in the house and other minor signs of neglect of their father’s place. His condition was to serious at the time to question him, but The girlfriend said that their father had given her the money to pay off her credit cards and she cared for him. After the man’s initial recovery from surgery, his kids asked him some questions and he said he’d given the money to his girlfriend because she needed it. My seat mate told me the girlfriend was a real-estate agent, which worried her. She added that her husband and his sister had found other discrepancies in financial matters and in the girlfriend’s story. The girlfriend had tried unsuccessfully to discourage the two from making follow-up visits to see their father. It was clear that her father-in-law was going to back up the girlfriend’s statements, and the girlfriend was trying to convince him that his children were only concerned because they wanted his money. My seat mate said she didn’t know what to do, because she understood her father-in-law was competent. However, she still worried he was being taken advantage of and worse yet, wasn’t being looked after as the girlfriend claimed. Both of his adult children were over 800 miles away with jobs that prevented them from being there more frequently, and their father was not willing to relocate closer to them. I have no idea what the truth of the situation was concerning this woman’s father-in-law. If he wanted to give thousands of dollars to a girlfriend, or anyone else for that matter, he had the right to do so. It’s possible that he may not have been taken advantage of by anyone involved, but any of the parties may have been looking for financial gain. Sadly financial scams and financial abuse are on the rise. Both men and women are susceptible to love-financial scams. There is the recent case of Mitch Gross in Atlanta, Georgia: http://www.ajc.com/news/atlanta/marietta-author-accused-of-1351638.html. Online dating scams are on the rise like the 2008 case where a man, posing as a woman, conned an Australian man out of $20,000 http://www.stuff.co.nz/technology/648903. Of course, there are other forms of financial fraud such as: collecting money for a charity that doesn’t exist; selling a non-existent stock or property; and home repair scams, where people agree to do work for payment up-front but never complete the work. Soon after I returned from my trip and had heard the father-in-law story, I learned of a financial abuse case in Fairfield, Connecticut involving Mary Kantorowski. Prior to her husband’s death, Mary and her husband had put their home in a trust to be managed by their oldest son, with the stipulation that Mary be able to live in the home. Through some legal maneuver, her son had dissolved the original trust, and formed a new trust held by him and his wife. This new trust dropped the stipulation that Mary could remain in her home. On Mary’s 98th birthday, her son provided her an eviction notice in order to sell the house and place her in a nursing home. Fortunately for Mary, her case has come to the attention of the authorities, but so many cases of financial abuse never do. To learn more about Mary’s case go to http://www.ctpost.com/default/article/Son-tries-to-evict-98-year-old-mother-from-3347230.php. How are we as a society going to do better at protecting ourselves and love ones against financial scams and abuse? And at the same time how do we age in place and provide people the freedom to live their lives the way they choose? How can we help people remain engaged and avoid isolation: a risk factor for all forms of abuse? For more information about financial abuse and scams visit the website for the National Committee for the Prevention of Elder abuse at http://www.preventelderabuse.org/elderabuse/fin_abuse.html. To avoid falling victim to a scam or abuse follow these tips offered by the National Council on Aging at http://www.ncoa.org/enhance-economic-security/economic-security-Initiative/top-8-ways-to-protect.html

It’s All about the Trains

When people ask me why I continue to live in the Boston area, where the winters can be harsh and the price of rent can eat up well over half of take-home pay, I only have one answer: the trains. There is something wonderful about being able to leave one’s place and within 10 minutes or so be on my way on a train. For those of you who drive, you must recall what it was like when you got your first car and could take yourself where and when you wanted. Driving allows you freedom. Just ask any former driver or a teen a month away from getting a license. For those of you living where public transportation is a bus system or a ride share program, then my love of the trains may require more of an explanation. With ride share programs one usually has to make plans one to three days in advance and allow an hour before and after a pick-up time, and on the way home the duration of the wait and travel time can be greater. On most bus routes, the buses come once an hour and getting to a destination may require one or two bus transfers. Taking the train in the Boston area is the closest I’ve ever gotten to the freedom of driving. In other parts of the U.S. it’s different. If I had to get on a bus and I was running five minutes late, I might end up waiting an hour for the next bus. And if I had to be somewhere by 9:00 am using a ride share program, I would have a pick-up time of 7:00 am, because the driver could show up any time between 6:00 am and 8:00 am. With access to a train system, when I’m ready I leave. There is so much power and freedom in having this ability! I hope I continue to be able to use the trains for many years to come, but I already understand the physical ability, balance, and energy involved in using the trains. Plus, being able to use a train system requires me to keep a well enough paying job to afford living in an urban place where the rents average over $1500 per month. I heard a woman say once that she didn’t want her tax money going to public transportation, because pretty much everyone had a car or should get a job so they could get one. I don’t drive, but my tax money goes to the upkeep of streets and interstates, and I’ve never said I did not want to support drivers. I don’t read signs either, but I’ve never suggested that all street signs be removed because I didn’t think my tax money should support posting signs. Clearly the woman making this tax statement against public transportation didn’t have epilepsy, could pass a driving eye exam, and hadn’t developed any physical or cognitive limitations that made driving unsafe. And maybe with luck or by grace she will never develop any of these problems. However, a growing number of people are facing the issue with their own ability to drive or with a family member. Yet, as a nation, and in our states and local communities, we continue to sit on our hands and do little to address this issue. We leave it up to family members or doctors to take keys away from someone, often with no transportation plan in place to allow the person to remain socially active and productive. We have programs in place that attempt to promote people with a disability to work, but then we leave it up to family or friends to provide daily, reliable transportation to jobs. I don’t understand the lack of support for public transportation: both in expanding train systems and in developing alternative transportation systems that work well. Public transportation can reduce congestion on the roads, be convenient for those that need to work on the go and don’t need the distraction of driving, and in helping to reduce isolation and increase civic involvement among those who cannot drive. What can be done? You can support The Senior Transportation and Mobility Act of 2012 (H.R. 4028) or the Senate version introduced last Fall (S. 1942) by contacting your U.S. Representative or State Senators and telling them to support this legislation. Learn about the act here: http://www.paramuspost.com/article.php/20120216101624172 http://www.ncoa.org/public-policy-action/policy-news/bill-would-strengthen-senior.html You can learn more about Transportation for America; go to their website http://t4america.org/ If you drive: You can offer a friend or neighbor a ride. You can volunteer as a driver for a local transportation program that provides people with rides.

Stories From My Commute: The Ridiculous Things People Say

Envision a blind woman walking along the sidewalk on a moderately busy city street using a cane. The sidewalk has cracks and bumps in it and there are some oddly placed poles. A male, whom she does not know, approaches on her right and passes her. As he does, he says, “You should really practice walking on this route.” Really? This was one time when I couldn’t think fast enough to say anything. Thankfully, I ran into him again about a week later. He had the nerve to say to me “you’re doing good today.” I said, well when you lose your vision or one of your other senses, then you can judge, but until then be thankful for what you have. After all, you’re going to get older and it’s going to happen to more people like you. And I think you’ll find that the world isn’t all that set up for you. All things considered, I think I was pretty nice. Humor me, and picture a blind woman moving through a crowded train station built decades ago. The trains rumble in with high pitch squeaks. Sounds echo and people are moving in all different directions. A woman comes face-to-face with the blind woman and says “watch out”. Really? I am not sensitive to language as a general rule. I ‘saw’ the item in the news, and I ‘watch’ movies. I can concede that no other warning jumped to the woman’s mind; maybe she hadn’t had her morning shot of caffeine. It’s also possible that she wasn’t all that bright, or was unaware of what the cane meant. After all, there can still be some shock associated with blind people moving about in society.

When you love, what is it that you love?

In a recent Psychology Today article Lynne Soraya asks, “When we love, what exactly is it that we love?” Seems like a timely question, given the topic of Hallmark, jewelry, and florist commercials. It’s one worth thinking about… It’s possible that love is shared interest, physical looks/attraction, or something else. Maybe love is all about what the “love” does for you... If one listens to long-term couples talk about what made their relationship work it’s things like commitment, caring, a sense of humor, and working things through together. One gets the idea that things like gray hair, arthritis, reduced sex drive, and hearing loss do not make the love disappear. I suspect that the truth of this idea depends upon one’s answer to the “love” question, but is that all there is to it? Think about a parent’s wish for a child to grow up having friends and socializing with others, partnering, and having children. Consider Louise Kinross’s story about her son, who has a disability, and finds himself friendless as a preteen. People of all ages living with a disability are at-risk for social isolation and lovelessness. All evidence suggests that this is not because people with a disability are unable to care or commit, lack a sense of humor, or can’t work things out with others.--- When you love, what is it that you love? To read Lynne Soraya’s article go to http://www.psychologytoday.com/blog/aspergers-diary/201201/love-identity-and-disability For Louise Kinross’s story about her son visit http://www.huffingtonpost.com/louise-kinross/genetic-disability-friendship_b_1263895.html

Stories from my commute: The Possum

Recently on my commute I experienced two different situations that were equally unhelpful. Both involved an individual who stood perfectly still. I might not have remembered either of these events, but because they both occurred on my way to work in a single morning, they have stayed with me. For those of you who do not know me personally, I navigate through the world with a cane. IN this age of high tech, I know it seems ridiculous that the only two options for independent mobility for people who have low or no sight are a dog guide or a cane. Regrettably no one has applied his or her knowledge of robotics to independent orientation and mobility. I keep hoping that instead of target seeking drones, the amazing techno geeks can develop a navigational guiding system for people with low or no vision. However this idea probably warrants its own blog entry, and I should get back to my story. It was the typical morning; I’d started moving with the assistance of my cat, who persistently requested her breakfast, and two cups of donut shop coffee. I made myself presentable for work, shut off the Keurig, and scratched the sleeping cat before heading out the door. I passed the guy distributing The Metro to the morning commuters, and had just scanned my card to gain entry to the train. I was moving from the gate to the stairwell leading to the train platform when my cane hit a still form. I attempted to move to one side to reach the stairwell, but there was a stream of people moving beside me. I waited for an opening and moved over to get to the stairwell. I had to be more cautious than usual because I couldn’t use the railing to help identify the stairs. As I passed the obstacle, I realized it was an individual leaning up against the start of the handrail at the top of the stairs. After I passed him I heard him mumble sorry. I remember thinking “jerk”, but to the best of my ability, I kept moving with the flow of people who were hoping to get on the incoming train. I suppose it’s possible that he was glued to that spot for a sociological study or handcuffed to the railing as a practical joke, but it was probably just a complete disregard for others and a lack of awareness of the trouble he was causing. I reached downtown where I switch trains, and while I was waiting, I ran into a train acquaintance, Nancy. We greeted one another and exchanged pleasantries as we waited. The wait was longer than usual, and as a result, our train was crowded. When the train reached our stop, I moved to get off. I got to the three steps leading to the door of the train, and there stood a guy with his backside pressed up against the railing. I was able to carefully navigate down the steps and onto the platform, again wondering what the heck was wrong with people and why this guy felt he had to guard the handrail. Was he really so frightened at the prospect of a blind person moving to get off the train that he was unable to move? It flashed through my mind that if he’d fallen over I would have some circumstantial evidence for an evolutionary anomaly that made him like a possum. As I started down the platform toward the station exit, I realized that Nancy was struggling. She got stuck in the doorway of the train and had to yell to get the conductor to allow her the time to get off the train. The self-appointed handrail guard hadn’t moved, and I knew Nancy had a bad knee. I was really concerned Nancy was going to fall, so I turned back in case I could be helpful. I stood long enough to know she was off the train and no harm had come to her. I hope that the possums got the message and move next time. There is a reason for handrails: Access to handrails help prevent fall related injuries and deaths by providing guidance or support for people as they navigate stairs. By playing possum you may be increasing the risk that someone could fall and get seriously hurt. While it is true that most falls happen in one’s home, a fall getting on or off a train could be devastating. If the potential harm to someone isn’t enough to convince you, just think of the inconvenience the train delays would cause you if someone fell and needed medical attention.

Action Plan

Recently, people have begun to talk about the potential market power of people with a limitation in their physical, sensory, communication, or cognitive functioning. Check out this article by Michael Janger http://www.brandchannel.com/features_effect.asp and this link from Diversity World http://www.diversityworld.com/Disability/customers.htm. It’s true; having a product designed with all users in mind can gain a company popular press and sales. The most obvious example is Apple. Wonderful, we know what works: demand for usability and universal design. The question is how do we get steering committees, company board members, and engineers among other product designers, to change? This isn’t an easy question to answer because people with any need for an alternative way of getting things done are vastly underrepresented in these powerful roles. Fortunately, there is so much that can be done that there is a task for everyone. I. Inform the company and let your social network know about a product you like because of its design features. Companies need this feedback whether they are creating something for a specific market or for wider use. If you are a member of any groups or participate in any use of social media make sure you use these outlets to promote the product. Keep in mind that there is nothing wrong with the traditional phone call or letter if that is more your style. If you are to ill or busy, or lack the confidence to do this yourself, keep it in mind for the next person who offers to help. II. Get the word out about a poorly designed product or line of products that do not meet your need. The “user experience” is important. Make sure you let the company responsible for the product know, and when you do, let them know you are sharing this information with your social network. Try to be clear about the problem, and if you can think of any, offer solutions. Don’t forget that most design elements that are not functional for all people are made because people lack knowledge and information. The ability to place oneself in another’s shoes isn’t universal, and often exists more in people with less power. III. Look for opportunities to use your purchasing power to support companies that use universal design principles, increase accessibility, and employ and promote people with limitations in their physical, sensory, communication, or cognitive functioning. If you belong to any groups, look for ways to promote those companies, use their products, and make sure your group contacts the company with this information. Maybe they’ll even pay to include you in an advertising campaign or ask you to be involved in product testing. IV. Expand your thinking about diversity to include people of varying abilities and look for ways to promote this idea within your company or in your civic group. I am not suggesting that racial and ethnic diversity are less important; I am simply saying that diversity should not merely be assessed through an individual’s complexion or country of origin. When different perspectives get brought to the table, acceptance and innovation tend to follow. People who have to seek out alternative ways of navigating through life and getting things done can bring fresh ideas and different perspectives to your community organization or company. In order to be a market force people desiring universal design features or seeking alternative solutions for interacting with their environment must be willing to be vocal and counted. It is only through these actions that change will be forth coming and people on those steering committees, board of directors, and product design teams will begin to see the return on their investment in universal and alternative design.

Stories from my Commute: a woman stuck on the train

Anyone who has spent time in Boston and used the transit system, which is called the T by locals, has probably heard the story of Charlie. According to the story, Charlie got stuck on the train and did not return because he lacked the nickel he needed to pay the exit fare. His wife would meet the train daily and toss him a sandwich, leaving one to speculate why she didn’t just give him the coin. The story isn’t true; it is from a song performed by the Kingston Trio and used during the 1948 election for Mayor. http://youtu.be/3VMSGrY-IlU I never expected to observe a modern-day version of the Charlie story. After all, the T doesn’t use exit fares as it did in 1948, and I would assume that if one entered a train, the same person could exit. However, I did witness this situation on an unseasonably warm, rainy Friday evening. As thousands of people funneled through the t station, I stood awaiting the train I required. The sounds of a local musician echoed in the open space, though the elements of the music were distorted from the rumble of the trains overhead. After a 5 to 10 minute wait that felt much longer, the announcement came that my train was approaching. This train was going to be crowded; no way around that at 5:30 on a rainy Friday evening. The doors opened and a swarm of people got off the train heading to the various stairways. Oddly, only a couple of people seemed to exit through the doors closest to me. I moved closer and discovered that there was a woman blocking the doors unable to get off the train, and judging from the growing number of people behind her, she wasn’t moving back away from the door either. In a pleasant accented voice the woman calmly explained her plight, and a man on the platform indicated he had let the T conductor know she was stuck. There wasn’t anything I could do, so I moved down the way hoping to enter the train. No way; people were already packed in like speared sausages. You might be wondering how someone could manage to get herself stuck in the doorway of a train. Clearly there must be something wrong with the door or she must have much more weight on her than she should. No; neither of these things was true. The woman sat still unable to navigate herself over the gap between the train and the platform. The train was sitting lower than the platform; no wonder with all those people on it. And so there sat this woman looking out from the train a few feet away from the elevator she sought to use. She seemed calm until the announcement of the next train, followed by the tone indicating the doors were closing and they started to slide in on her. I could hardly believe it. I imagine that the intention of the T personnel was to stop more people from trying to get on this train when they clearly wouldn’t fit. A t employee then loudly said that he couldn’t find the part needed to cover the gap. Seriously, were they really going to keep her on this train and pull out of the station? Like Charlie was she going to be forced to ride the train around and around until she could secure her own exit? By this point 5 minutes had gone by. I couldn’t help but think that here was this woman who was using an alternative means of moving herself from place to place, and an environment that was hostel to her independence. And for her effort to go to downtown Boston on a Friday evening, she became the star of the Friday night subway play “Aggravation”. Within a few minutes more a T employee hurried over with the necessary plate, and the woman disembarked. I did here him apologize to her for the problem. And it would be good to pause here and say that parts of the T are quite old, and present a lot of financial and structural barriers in trying to retro fit them for universal access. The city of Boston and the T have made a lot of progress over the years thanks to some willing public officials, unfortunate accidents, and strong advocacy. Clearly, much more has to be done to make the area more livable for everyone. Fortunately for me, I was one of the lucky few the T employee allowed on the overcrowded train. As we rolled through the southbound tunnel, I found it difficult to get the woman off my mind. I wondered how many more starring roles she’d have that night.

U.S. Representative Gabrielle Giffords

By now most people have learned Rep. Gabrielle “Gabby” Giffords from Arizona has stepped down. A relatively young, dedicated, public servant, Gabbie held elected office for much of the last 12 years. I’m sure she will have many colleagues and constituents who will miss her and her work. The reason Gabby is leaving the House and her work representing the people of the eighth district of AZ is well known. The mass shooting on January 8, 2011, which seriously injured 12 and killed 6, received much press. Gabby’s public statement announcing her resignation suggests that she wants to focus on her continued recovery and in the future would like to return to work. Though Gabby and her husband, Scott Kelly, have rightly restricted the media access to her medical treatment and rehabilitation, we can imagine that relearning to walk and talk after being shot in the head is extremely challenging. At 41 Gabby’s acquired disabling condition certainly have changed the outlook she had for herself in midlife and beyond. I look forward to the day when she returns to elected office. It’s true that Gabbie will need the career support and technology necessary for her to function in such a professional role. Looking ahead, I hope these supports and technologies will be available to her and the millions of others who could use them to continue to work and be engaged in their communities.