Penny For Your Thoughts

A Day Late and a Dollar Short

PennyRdr — Thu, 22 Oct 2009 17:30:00 GMT

The message showed up in my e-mail in box seven times within the space of an hour and a half. Now, it's true that I am a member of lots of e-mail list-servs or "message boards," as some call them, but even for me, to receive the same message seven times within a couple of hours, and from seven different sources, may be some kind of record. The announcement concerns a new paper-currency identifier that costs only $99. Spending nearly a hundred dollars for a gadget that identifies the denominations on paper currency may seem like an extravagance to you, especially if your eyes work for the purpose of currency identification, and if you are unaware of the costliness of many pieces of assistive technology, but to the correspondents on the various blindness-related lists, this announcement was real news! The only other portable money identifier that anyone has ever known about or used has been selling for as much as $400, and I've never seen it for under $230, and that was a big sale! Some people own scan-and-read-aloud systems, like OpenBook, and Kurzweil, with a currency identification feature, but the software costs well over a thousand dollars, and flat-bed scanners are neither ESPECIALLY portable nor fast! I think the new scan and read software that can be installed in a cell phone has a currency identification feature, but that system is also quite expensive, selling for well over the $99 price tag for this little gadget.

People were definitely excited, some were counting their pennies to see just how soon they could order the gismo, which is being marketed by Orbit Research, and is called the iBill Talking Banknote Identifier. Others were adding it to their holiday wish lists.

Not I! I don't want one. I don't covet it, I won't be buying it for myself or for a friend, and, before too long, I won't need it! That's what I told several people who had passed along the announcement to me. The U. S. Department of the Treasury is under a court order to make our paper currency accessible, and although the months and years have dragged by since December of 2006, WHEN the American Council of the Blind (ACB) won their 2002 law suit against the U. S. Department of the Treasury, and since the Bush administration immediately appealed that decision, and since the ACB prevailed in the appeals process in May of 2008, and since September of 2008 when the judge told the Treasury that they couldn't release any more new bills until they had found a way to make them accessible, and furthermore that he expected them to issue frequent progress reports detailing their efforts - and advancement - toward reaching the goal of making paper money accessible, and, since the Bureau of Engraving and Printing hired a consultant to compile statistics and research various means for doing just that, and since the consultants released a detailed report on the subject in August of 2009... Phfew, it's been a long time since attorney Jeffrey Lovitky filed the law suit on behalf of the American Council of the Blind in 2002, but our long wait must be nearly over, I told my friends and colleagues. I think this device is a day late and, at a dollar short of a C-Note, I'm not buying!

I began calling the Bureau of Engraving and Printing in the U. S. Department of the Treasury. Over two days, I called and left messages and was shuffled back and forth between departments and spokespersons, none of whom, it seemed, actually wanted to speak officially about the long delay in arriving at accessible currency, the court order, or an anticipated date for actually making our bills accessible. Finally, within minutes of my go-to-press deadline, Claudia Dickens, Manager for External Affairs, at the U. S. Bureau of Engraving and Printing in the Department of the Treasury, was able to answer my questions. Her answers have made me think again about my refusal to purchase a gadget that will read aloud the printed denominations on paper currency. The wait has been a long one, and, according to Dickens, there is no definite end date in sight!

"We are still analyzing the results from the report," she said, and, no, they have not identified one best solution for making currency accessible.

Why, I asked, is it taking so long? In 1995, the National Science Foundation conducted significant research about ways of making currency accessible for people who cannot see. They released a comprehensive report. The Department is aware of that research, is it not, I continued, momentarily abandoning my resolve to come across as objectively as possible.

"The report is on our web site," she replied. "But it's not as simple as it would appear," she said.

"Can you project a date by which time we can expect the issuance of an accessible bill," I asked.

"No," she said. "It won't be until after the issuance of the new one-hundred dollar bill," and she added, "And we don't know when that bill will be issued."

"Will it be accessible?" I asked.

"It will not," Dickens replied. Apparently, or at least according to her explanation, currency does not have to be accessible until the Department issues the bill that comes out after the new one-hundred.

So, now, I'm rethinking my resolute commitment to wait for the Treasury to come through. My wait, it appears, may continue to be a long one.

Maybe an extra hundred dollars isn't all that much to spend for easy access to the printed information on my paper currency, I'm trying to convince myself. None of the reasons for declaring that the U. S. Government is violating Section 504 of the Vocational Rehabilitation Act of 1973 by not making paper currency accessible to all of its citizens has changed. I guess the court, and ACB and their lawyer are still receiving progress reports from the Bureau of Engraving and Printing. Who knows exactly how long the Bureau can or will delay...

A year ago, in this blog-space, I urged then Secretary of the Treasury Henry Paulson, to move making paper currency accessible up on his to-do list. A new administration has come to town, and, yes, there are many extremely important issues on their proverbial plate, but it appears that we still need to encourage the Treasury Secretary to make this civil rights issue one of them and move accessible currency up on the departmental to-do list! Secretary Bernanke, are you listening?

It appears that, once again and still, it's the U. S. Department of the Treasury that's a day late and a dollar short!

Health Care All Day, Every Day

PennyRdr — Wed, 30 Sep 2009 13:58:00 GMT

September 29, 2009

As we near the end of September and think about the issues that have dominated our conversations and consciousness during the first month of autumn 2009, the theme is obvious. It has been health care reform. Day and night, and night and day and on and off the air, everyone has been talking, thinking, complaining, hoping, regretting, threatening, persuading, bemoaning, waking, sleeping, eating, drinking, breathing health care reform. September's focus has been health care reform every day, all day, during every hour of every 24-hour news cycle. And, at the beginning of the last week of the month, after a summer that was nearly ruined by a profound lack of civility and acrimonious debate, and a Labor Day week end marked by a re-invigorated commitment by progressives to pass meaningful healthcare reform to honor the life work of Senator Edward [Ted] Kennedy who died on August 25, after wall-to-wall commercials and dueling full-page ads in the nation's newspapers, after ranting and raving and wringing of hands and pointing of fingers at Fox News and MSNBC and everywhere in-between, in response to a rousing health care reform centered speech delivered to both houses of Congress and millions of TV viewers and radio listeners across the country by President Obama on September 9, and after contending with e-mail in-boxes and Twitter screens overflowing with "Action Alerts," on the day when debate is finally set to begin in the Senate, no one knows yet what will happen.

Health care reform has been on presidential agendas for nearly a century, and yet, we still don't know if we'll get it done, or if we do, whether the changes we make will be more or less substantial or cosmetic.

What we do know is that President Obama intends to get it done, whether or not intransigent Republicans decide to go along with health care reform legislation, and that we can expect some kind of reform to emerge from long months of often acrimonious debate by the end of the year.

Another thing we do know is that reform is a necessity. Even the most vociferous of right-wing politicians who characterize nearly every reform suggestion as "socialism," and threaten that tax Hikes to pay for health care reform will send the fragile economy into a dissent from which we cannot recover (and these are the polite ways they describe proposed reforms), concede that some kind of reform is inevitable, and, most grudgingly admit, necessary.

On the other side of the debate, and usually speaking publicly in far more civil tones than the Libertarians and so-called "Tea Baggers," who attempted to disrupt reasonable debate with name calling, fictional scare stories, and other methods of intimidation during much of the month of August, are those on the left who maintain that no health care reform will be acceptable unless the solution includes a public option that can cover health care costs for the more than 30 million Americans who have no coverage and for the many more for whom their existing coverage is not likely to be enough, and which is necessary to (This is how the advocates state it nearly every time) keep the insurance companies honest.

Then there are the polls. Have you picked up a newspaper or magazine since September 1 that didn't cite some poll result or another? polls indicate that between 52 and 69 percent of the American people believe that a public option is essential. And, when the "New England Journal of Medicine" surveyed physicians over the summer, researchers found that 57.4 percent of physicians favor the inclusion of a public option. Polls of nurses and other medical professionals yield similar percentages.

Before the August recess, the House of Representatives managed to get health care reform bills through their committees on Education and Labor, Ways and Means, and Energy and Commerce, and all include a public option in one form or another. The Senate has four bills finally out of committee and under consideration. The Finance Committee bill for which bipartisan agreement was held out as the reason for prolonged discussions and attempts at compromise, finally made it out of Senator Baucus's (D, MT) committee in mid-September with no support from the three Republican members of the so-called "Gang of Six." That bill does not endorse a public option, but it does mandate that every American purchase some kind of health insurance coverage, it opens up Medicaid to more potential consumers, and it establishes some kind of insurance co op where consumers would be able to shop for a plan they could afford. And Senator Baucus has stated that, even though his committee's bill does not endorse a public option, if the compromised healthcare reform bill that finally emerges from Senate debate mandates a public option, he will vote for it.

Senate debate begins today, and, with 14,000 more Americans losing their health coverage every day, with companies large and small filing for bankruptcy because they cannot begin to meet the staggering costs of their employees' and retirees' health insurance coverage, with people dying because of lack of health care, it's time, past time, to reconcile differences, respond to the electorate's wishes, and get it done!

Over the long months of debate, the disability community has reached consensus on the need for health care reform and the specific measures most want included in the final reform bill that ultimately emerges from the Joint Senate-House Conference Committee. On September 17, representatives from disability rights organizations, including the Disability Coalition for Health Care Reform, the ARC, United Cerebral Palsy, the National Council on Independent Living, and the Justice for All action Network, met by teleconference with interested members of the disability community to discuss healthcare reform and the goals they insist final reform legislation must include for people with disabilities. The statement they shared with teleconference participants says, in part:

National Health Care Reform for People with Disabilities [must include]:

Guaranteed, affordable health coverage for all with a choice of private or public plans that cover all medically necessary services.

People with disabilities need a wide range of health care, durable medical equipment, mental health and home and community-based services. Individuals with disabilities [currently] experience many barriers including costs, limits on types and amounts of benefits, pre-existing condition exclusions and lack of specialists and primary care physicians that understand specific disabilities. Proposals that offer acute care programs modeled on Medicare or rely solely on private insurance plans will not meet the needs of people with disabilities.

We support health reform that will:

End the costly two-year waiting period for Medicare;

Provide Medicaid health care coverage to all Americans living at or below 100% of the federal poverty level;

Eliminate pre-existing condition exclusions and rating based on age, health status and gender;

Reform the long-term care system to increase choice and access to home and community-based services so individuals with disabilities can live in their own homes;

Include subsidies for lower-income Americans who cannot afford health care costs.

Too many people are going without necessary health care and are incurring medical debt. And too many businesses - large and small - are unable to compete due to the high costs of health care. In our current economy, we cannot afford not to provide guaranteed, affordable health care coverage with a choice of private or public plans that covers all medically necessary services."

At this point in time, it appears that all of the bills that have emerged from committees in the House and the Senate meet, to some extent, these stated goals.

This is what the four healthcare reform Senate bills and the three bills that have emerged from House committees have in common: Insurance market reforms, including prohibition of pre-existing condition clauses and discrimination based on health status, annual and lifetime caps; and requirements for guaranteed issue.

Even the bill that emerged last week from the Senate Finance Committee after Committee Chair, Max Baucus spent weeks attempting to craft a bipartisan bill that would satisfy the Republican members of the so-called Gang of Six, and hopefully, by extension, appeal to other Republican and Blue Dog Democratic Senators, meets many of these stated goals, although even without requiring a public option (so loathed by those on the right, especially the insurance companies) , not one Republican committee member has signed onto the bill, and within a week of its introduction, there were already more than 500 proposed amendments up for discussion.

Within a day of the bill's introduction, Senator Charles Schumer (D-NY) sponsored the Community First Choice Option in Medicaid amendment to the Senate Finance Committee's health care reform bill. and disability rights advocates were celebrating inclusion of the amendment. Of all the Senate bills under consideration, this one is the most modest in terms of changing the healthcare patchwork that characterizes our current system, and rocks the insurance company dominated status quo the least. Was introduction of the amendment a calculated way to rally a whole group of otherwise apathetic constituents to the cause, or did Senator Schumer simply take advantage of an opportunity to get something that has needed to be done accomplished? I guess what you ultimately believe about Schumer 's introduction of the amendment which would give the states an option to provide a wide range of community-based services to people who would otherwise qualify for only the institutional level of care, depends on your level of cynicism about the process and the various priorities of all the various players. Or maybe the Senators' motivations simply don't matter to you if Medicaid's institutional bias can cease to exist and money follows the person can finally make it into some kind of legislative mandate. If you are one of the more than 300,000 people with severe disabilities who are currently desperate to escape from segregated nursing-home care situations, you probably don't care how or why community choice funding that might get you out of your predicament happens, just that it does.

So, as debate is scheduled to begin in the Senate, here is where we stand. I count a total of seven healthcare reform bills, three in the House and four in the Senate, that are waiting for an opportunity to become the law that will finally change our fragmented health care system and provide decent, affordable medical coverage for all Americans. Six of the seven include a public option for people who cannot get coverage from their employers or who do not want to have to rely on existing health insurance companies for health care, and all of them require the insurance companies to change the way they've been doing business. The fight has already been long and ferocious, and we can expect the situation to heat up dramatically as the health insurance industry increases the pressure on legislators to hang onto as much of the status quo as possible. Now is the moment for us to become hyper-vigilant because we're closer than we've ever been to meaningful reform and we can't let it slip away from us as the amendments are debated and the votes are cast. We can expect the name calling and the hyperbole and the scare tactics to escalate as reform opponents pull out all the stops to forestall change. As a person with a disability, a mother and a grandmother, an an American, I urge the Senators who have worked so long and so hard to achieve meaningful healthcare reform to stand strong on behalf of all of us who know how important universal, affordable healthcare is. Every day 14,000 more Americans lose their health coverage. We spend more than any other industrialized country on earth supporting the inequitable patchwork of health insurance provision that currently passes for healthcare in the USA, but our system leaves too many people out, it is too expensive in too many ways, it is not sustainable, and it is not compatible with our democratic ideals or with our own image of ourselves as a nation and a people. As I turn to CSPAN to follow the debate and I check my e-mail in box to keep up with the action alerts, that will inevitably arrive with each e-mail download, I am cautiously optimistic and also determined not to allow this opportunity for real, meaningful change to slip away.

It's Not Patterson's Blindness That Explains his Failures as Governor

PennyRdr — Tue, 25 Aug 2009 02:59:00 GMT

Here's a headline that I would have hoped never to encounter: "Paterson's sight hurting job."

The article that follows, which can be found at http://www.silive.com/news/advance/index.ssf?/base/news/1250927108150700.xml&coll=1

details New York Governor, David Patterson's abysmally low state-wide approval rating and decries his alleged ineptitude as New York's governor, and, here's the major problem I have with the article's allegations, ties Patterson's shortcomings to his visual impairment. With headlines like this, it's no wonder that the unemployment rate for people who are blind exceeds 70 percent! With attitudes like this, so blatantly and unapologetically stated by NY state Sen. Diane Savino who is liberally quoted in the article, it's a wonder that any of us who are blind and visually impaired ever even makes it to the initial job interview phase of our quest for employment!

I am far from qualified to dispute Ms. Savino's assessment of Patterson's record as governor. I don't live in or even near New York; I don't often follow politics in the Empire State, although I did find recent published descriptions of the behavior of various New York State legislators pretty unbelievable and I was grateful that it wasn't Democrats or Republicans in my own state house in Annapolis locking one another out and generally behaving like summer campers involved in some color war gone terribly awry. I was not favorably impressed by the nastiness that Patterson exhibited toward Caroline Kennedy when he had the opportunity to appoint a Senator to fill Hillary Clinton's vacated Senate seat, and, from time to time, I have read other statements released by Patterson or his office that made me wonder just how well qualified this man is to govern an important state like New York. Suffice it to say that I have not been very favorably impressed by his leadership skills - Does he have any? - or his petulant remarks - He seems to make a lot of those. If I were a New Yorker, I would hope, along with State Senator Savino, that he can be persuaded not to run for another term, because it would be hard for me to vote for him.

But, to connect his low approval ratings and his alleged ineptitude with his disability, this kind of correlation is false and stating it so blatantly can have disastrous consequences for all of us who are blind, visually impaired, and disabled, especially since so many people with disabilities, particularly those who are blind and visually impaired, were so celebratory of Patterson's ascendancy to the position of governor, simply because he is blind. (Let us hope that disability advocates have learned some lessons about making assumptions, good or bad, about what a person's disability, in itself, might, or might not, portend about his ability to do a job.)

Ms. Savino points out that Patterson cannot read print. She says that he relies on his staff, not only for reading newspapers, reports, and other printed materials aloud, but for their summaries of various reports and their advice as well. Lots of politicians rely on staff members, whom they have chosen after all, for help and advice, but Savino implies that Patterson's inability to read print independently makes it impossible for him to gather the information he needs for making good decisions. She says that he cannot rely on the e-mails and Blackberry communications that people who are sighted take for granted, and that, since he doesn't know braille, he can't keep track of the information he requires without having to rely exclusively on memorization.

These claims tell us more about the state senator's lack of familiarity with blindness and with people who are blind than they tell us about the governor's short-comings. If Patterson is inept, if he seems sometimes to be detached from reality, if his decision-making skills are poor and he relies too heavily on staff and not enough on becoming well informed himself, then these shortcomings are the fault of the person, David Patterson. They have nothing to do with his blindness, and to claim that they do sends a very derogatory message about the rest of us who are blind. There are all kinds of tools that Patterson can utilize for doing his job; if he isn't taking advantage of these tools, or he doesn't know how to do so, his blindness is not the thing that is preventing him from governing effectively.

Screen readers, software which reads aloud the content on a computer screen, have been around since the days of DOS. If Patterson does not use screen readers for e-mail, word processing, surfing the internet and reading documents, then it is the fact that he doesn't take advantage of this very powerful tool that puts him at a disadvantage, not his blindness!

Savino assumes that reading by listening is so time-consuming that the governor cannot possibly keep up with the amount of reading he needs to do, but this claim, too, is without merit. All spoken digital content can be sped up to unbelievably rapid levels. I know many people who listen to speech content so rapid that the Chipmunks, by comparison, sound like they have a Southern drawl. One can read every major newspaper as DAISY content or via Audible.com subscriptions, by downloading files from BookShare, or directly from publication web sites, and scanners and text-to-speech capabilities from Kurzweil, Open Book, and now e-book readers like Amazon.com's Kindle are making options for reading via listening so commonplace as to be taken for granted. And, people who have print disabilities also have all of the dial-in newspaper reading options that are accessible via services like the NFB NewsLine and the Metropolitan Washington Ear and various radio-reading and dial-in news organizations all over the country. Humanware is about to release an accessible Blackberry, and the Iphone, which is accessible via Apple's built-in screen reading technology is high on my own personal technology wish list. Patterson may not avail himself of these technologies, or he may not have taken the time to learn to use them, but if that is the case, it is not his blindness that keeps him from accessing e-mail, internet content, and media independently.

Many of us who, like Patterson, grew up with low vision did not learn to read and write in braille. Fortunately, there are now laws, including IDEA and various "Braille Bills" that have passed in many states that mandate the teaching of braille to legally blind children in today's public school classrooms, and, hopefully, the number of blind and visually impaired people who know braille will increase over time. That said, however, there is nothing to prevent the governor from learning or using braille even though he didn't learn to read and write with the code went he was six. I didn't learn braille until I was the mother of six and well beyond first grade. The agency that provides vocational rehabilitation services to the citizens of New York State can provide a braille teacher for the governor, or he can learn braille, on his own, via the excellent distance education courses that the Hadley School for the Blind makes available free of charge. He can check out the braille teaching materials available, again, free of charge, from the National Library Service for the Blind and Physically Handicapped (NLS). Or he can continue to decline to learn braille and employ other efficient methods for reading, writing, and keeping track of information, including using digital recorders, leaving himself messages on his telephone answering machine, or asking an assistant to take notes for him and make them available upon request. To claim that the Governor's ignorance of the braille code keeps him from being an effective governor is simply untrue!

Anyone in political life is, unavoidably, open to criticism, and Patterson is certainly no exception. But, I urge his critics to evaluate his performance as governor without attributing his failures to his disability. Just as it was unwise for some disability advocates to assume that Patterson's disability would make him a more compassionate or empathetic or friendly to other people with disabilities governor than someone without a disability might be, it is equally wrong, when his performance is found to be lacking to attribute his low approval ratings and his mistakes to his blindness. It is insulting to those of us who are blind to attribute David Patterson's failures as governor to his inability to see. The state senator acknowledges that an economy in free fall and a legislature's apparent revolt against itself have hindered Patterson's ability to govern. Neither of these circumstances has anything to do with his disability. She also claims to be supportive of him (in the moment) as the only governor New York State currently has, and to find him likeable and, in many ways, brilliant. Neither of these more positive appraisals has anything to do with his blindness either.

David Patterson's blindness should be thought of as neutral, having nothing to do with his successes as governor or with his perceived failures. I hope that State Senator Savino will re-evaluate her analysis of the governor's short-comings and leave his disability of blindness out of the evaluation criteria she chooses to use.

After the Job Interview: What's Next?

PennyRdr — Wed, 05 Aug 2009 01:20:00 GMT

Okay, you did it! You retrieved that perfect black or navy-blue interview suit from your closet, or the "CareerWear" section of the one remaining department store at the mall, or the dry cleaner's; you got the trim at the local hair-cuts-R-Us, you spent hours on the net researching the company, you buffed your shoes until they shone, you called your references to let them know someone might be calling and to make sure they were okay with your listing them and their contact information, you removed the bright nail polish and replaced it with a neutral shade, you toned down your make-up or added just a touch of lipstick if you'd gotten out of the lipstick habit, you made sure that interview shirt or blouse was free of spots with a collar that was starched to perfection and no visible wrinkles, you practiced all the relaxation techniques you ever learned, and you spent some real quality time with the Video Interview Training feature at Gettinghired.com. You arrived on time and made a wonderful impression. As the interview was wrapping up, you remembered to summarize all your experience that conforms so perfectly to the requirements of the job you were interviewing for, and you asked your interviewer for an estimate of when the company might reach a decision. You told him or her, or them in the case of a panel, that you would be calling to follow up in a few days (or whenever seems appropriate depending on their answer to that last question). Now, the interview is over and all you need to do is wait for that all-important call... Or is there something else?

Actually, there is, and the interview follow-up may be nearly as important as the job interview itself. Once you've gotten back home and taken those all-important cleansing breaths, once you've kicked off your interview shoes and called the important people in your life to let them know how it went, you'll need to spend a little more time following up.

Send a thank you letter. Your great aunt Sally was right when she stressed the importance of writing and sending thank you notes, and it's particularly important to send such a note after a potential employer has taken the time to get to know you and consider your application for an available job. You might think about the way you have been communicating with Human Resources or the company's interview team when considering just how to send the thank you note. For example, if you've been back-and-forthing via e-mail, it seems perfectly acceptable to e-mail your thank you note, but sending a nicely word-processed letter that will arrive, within a maximum of a day or two, in your interviewer's snail-mail box is also a perfectly acceptable approach. Faxing a thank you note seems rather cursory and is likely to be the least desirable delivery method for your letter. If more than one person interviewed you, then write a separate note for each person, and send each one separately.

Several online career advice web sites whom I consulted suggested that if you word process your thank you note (an obvious choice for those of us who cannot produce readable hand-writing or whose hand-writing is illegible), then the color of the ink used for the note should match that of the resume you submitted earlier. Others suggest that the paper or note card that you choose to use should be nicer, i.e., heavier and less glossy, than the cheaper copy paper so many of us choose for stocking our home printers.

If you e-mail your thank you note(s), remember to spell check and if grammar is not one of your strengths, then grammar check as well. Do not address your e-mail to one person on your interview panel and then cc everyone else; send a separate note to everyone with whom you met.

As for what to say, the best advice I've seen is to keep it short, keep it simple, and make it sincere. You may want to say something like this:

Dear Ms. [Interviewer]:

Thank you for taking the time to meet with me today, [Month Day, Year]. I enjoyed meeting you and learning about the employment opportunity which we discussed. I am pleased to discover that my skills and experience are such a great match for the job responsibilities you outlined during our discussion.

As I indicated, I am available to begin working for [Name of Company] as soon as [Date]. I look forward to hearing from you soon.

Sincerely,

[Your Full Name]

Use the business-letter format you learned back in the fourth grade, beginning with your mailing address and today's date on the left margin at the top of your word-processed letter; followed by the company's name two lines below, Attention: Interviewer and Title, below that

And The company's address on the last line above the salutation, which should follow after you skip one blank line.

If you've decided to include or attach any additional, relevant documents, for example, writing samples or letters of reference which you mentioned during the course of your interview, remember to note the "Enclosures:" in the body of your note, and two lines below your signature, or, if you're e-mailing your thank you note, remember to attach the attachments!

Mail your notes and wait. Remember to keep breathing and to keep right on looking for other job opportunities while you are waiting for that call back.

After a couple of days, maybe three, or on the date by which your interviewer told you the company should have reached a decision, pick up the phone and call your interviewer back. Here's a suggested script (but remember, make it your own!):

Hello, Ms. [Interviewer]. This is [Your Name]. I met with you last [Day] and we discussed [the specific job]. I'm calling to ask if you have made a decision yet about filling the position, and to find out if you have any more questions for me.

If you got the job, then thank the person on the other side of the phone call, and begin asking questions about next steps. After you say good-bye, do the dance of joy!

If the company is still in the midst of deciding, then tell Ms. [Interviewer] that you will call back in a couple of days, or ask when it will be convenient for you to call back.

If you didn't get the job, then realize that something better is waiting for you. Thank Ms. [Interviewer] and express an interest in any future opportunities that may be coming up when the recession is no longer the focus of our existence.

Don't lose heart. You have great skills and an indomitable spirit. The way you have dealt with your disability and your life circumstances is so illustrative of that! Keep right on looking. Send that interview suit to the cleaner's again and update your resume with anything you wish you had included this last time. Look around for opportunities for volunteering or interning in the field that captures your interest or sign up for some relevant training online or at your local community college. Keep on keeping on, and know that your efforts and your determination will be rewarded.

Summer Silliness: Cars for Blind Drivers

PennyRdr — Thu, 23 Jul 2009 18:26:00 GMT

It's mid-July, and lots of people are on vacation, wishing they were on vacation, or remembering the sea breezes and salty air and boardwalk fries from their last summer escape. At least, that's what I've been thinking must be the case because of the recent silliness of news stories related to blindness that seem to tumble out, one on top of another, every single summer week. It's just too hot to be thinking clearly. That must be why scientists, in all seriousness, are developing a curriculum to teach people who are blind how to find their way by clicking like bats and dolphins, and why engineering students have used funding from the National Federation of the Blind to develop a car that, they claim, blind people can safely drive..

Yes, I know, quite a number of people disagreed with my take on the news story of last week that involved teaching people to use tongue clicks to find their way through the built environment. Over the last several days, I have met, online, a very competent O&M professional who is blind and who apparently quite effectively makes use of tongue clicks while he guides himself, and his students, through space. To each his or her own, I concede. But, I'm left still wondering, is a curriculum for tongue clicking orientation and mobility methodology worthy of all the attention the research project has received in the news media, and will people who are blind who click their tongues to orient themselves in space be more or less capable travelers, or more or less likely to be accepted by employers, colleagues, and their fellow sidewalk pedestrians?

Last week, it was the bat curriculum. This week, it's the car for blind drivers! You read it right: A car for people who are blind to drive!

Not people who are legally blind with enough partial vision to safely and effectively utilize a bioptic lens while they drive. There are, indeed, legally blind drivers who receive specialized driving training in order to use the bioptic lens, and, despite some restrictions in most cases on when and where they can drive, they are allowed to drive in spite of their legal blindness. I only wish I had enough vision to join their ranks.

I'm not talking about these legally blind drivers. Rather, I'm talking about a car whose development was funded by the National Federation of the Blind and which engineers at Virginia Tech University has spent time and money building for people who are totally blind to drive!

There is hardly a blind person alive who has not indulged in driving fantasies. Ours is such a car-focused society. Everyone we know drives here and there and everywhere. People who can see well enough to drive don't have to wait for paratransit vans to take them where they need to go. If there's an emergency, they can zip off to the pediatrician or the E.R., or wherever, as quickly as they can grab their car keys. People who can drive don't have to wait in the rain for buses, stand, hanging onto a pole all the way through town on crowded buses and subway cars, clamber over snow drifts or negotiate icy sidewalks when they walk to work or shopping or entertainment. Driving makes all of their lives so much easier! And, believe me, I do not discount the convenience of living with family members who can drive. I appreciate every single ride which accommodates me as a passenger who cannot see and therefore cannot drive myself.

Lots of us have taken fantasy one step further and actually conned some friend or lover into allowing us, however briefly, to get behind the wheel and propel a vehicle around a parking lot or down a road. Once I drove, for about five minutes, until my totally unnerved husband took back the steering wheel and banished me to the passenger seat where I belonged. We were driving from Kansas to Colorado, on those endlessly boring and very straight roads that crossed the prairie. Cornfields loomed on either side of our rented car.

"I could drive here," I said. "The roads are totally straight! We haven't seen another car on the road for hours! Really, I can drive."

So, I took the wheel and found that "straight" is more of a concept than an actual direction, and people have to make little corrections with the steering wheel, even when the road is straight. This was before the glaucoma and before the cataracts and before drastic changes in my eye condition when "blind" meant only "Legally Blind," and I thought I could actually see pretty darned well.

It turns out that ten percent of normal vision is not all that much, and driving was outside the capabilities I could count on.

Here's a story that my friend, Melanie, who has always been totally blind, told me about the time she persuaded her now husband to let her drive around a deserted parking lot:

"Before my husband and I were married, he took me to a large parking lot adjoining a county park on several occasions, to let me have the experience of driving. We always went late at night in an effort to insure that the lot would be empty and he'd let me cruise around the lot two or three times. The last time we were there, my husband failed to notice the presence of another vehicle in the shadows. He had turned off the engine so that I could experience the whole process of starting the car, stepping on the gas, and pulling out. I got the car started and was about to step on the gas when we heard a voice coming over a loudspeaker."

"Cease operation of the vehicle!"

All the lights on the police cruiser were flashing. We did as we were told, accompanied by sincere apologies.

The officer who approached my window was not smiling.

He asked me to let my husband drive from then on, as he had figured out what we were attempting to do and couldn't let us do it on county property.

Many people have told me about growing up on farms and driving tractors and other farm vehicles. Lots of us truly loved driving the bumper cars at amusement parks. Many have participated in the fund-raising "Braille Rally's," in which a blind navigator practices his or her orienteering and braille-reading skills while guiding a sighted driver through a pre-scripted course of travel. Every spring, it seems, there are news stories about blind drivers who climb into racecars and drive them, hell-bent for leather, across desert straight-aways, to raise money for one charity or another. I tell people that in my next life, I plan to be a truck driver, so I can go wherever I want whenever I want to go there!

But, spending money to develop a car that can be safely driven by people who cannot see where they're going? Come on now, I checked to make sure it wasn't "The Onion" I was reading!

This is how the newspaper article at Eurekalert.org describes the car:

"A retrofitted four-wheel dirt buggy developed by the Blind Driver Challenge team from Virginia Tech's Robotics and Mechanisms Laboratory uses laser range finders, an instant voice command interface and a host of other innovative, cutting-edge technology to guide blind drivers as they steer, brake, and accelerate. Although in the early testing stage, the National Federation of the Blind -- which spurred the project -- considers the vehicle a major breakthrough for
independent living of the visually impaired."

Apparently, the engineering students, and more unbelievable, the National Federation of the Blind believe that such a car is a real possibility for people who are blind at some point in the future. The laser range finders serve as the "driver's" eyes, and the "driver" is guided by a vibrating vest in addition to voice commands emanating from the computerized navigation system. A spokesperson for the NFB describes the project as the National Federation of the Blind's "going to the moon project," which means, I suppose, that they fully expect to be driving cars similar to this prototype, independently, and safely, down highways and byways, and interstates at some point in the future.

Now, I am the first person to extol the virtues of assistive technology! But this car project is taking the concept of assistive technology way beyond its current role of helping me to read, write, keep track of my life, know the temperature of my roasting chicken, and use my cell phone, to a place where, truly, assistive technology is not meant to go!

Mechanical systems fail. Even the best of them. Even those with the best safety records. A month ago today, the automated system that controlled Washington's Metro Rail subway cars across the system that thousands of commuters depend upon daily failed with disastrous consequences, for the nine people who died, and those who were injured, and for all of our confidence in a system and a technology that we have relied upon since the 1970s, and which has, until now, heralded its safety record as one of the best in the history of subway travel.

It seems to me that the Federation whose slogan is, "Changing What It Means to Be Blind," and who disdains spending research time and dollars on finding a cure for blindness, which their leaders define as "a mere inconvenience, has gone over the edge! The edge that separates wishful thinking from mindful thinking. The edge between what might be technically possible, and what might be in the best interest of people who are blind as well as the rest of the population, who are not.

If "The Car for The Blind" was a joke, or even a high school science fair project, I would be chuckling and feeling indulgent. But, it's not a joke! NFB spokespersons talk about the next iteration of the prototype as an electric vehicle and point to a time in the future when blind people will be driving similar vehicles along with all the sighted drivers on the nation's streets and highways. They are planning for the day when the Federation will begin actively campaigning in the 50 states to change the laws that restrict people who cannot see where they're going from driving.

With the promoted-as-unsinkable Titanic embedded in our collective consciousness, and memories of an exploding Challenger still bringing us to tears, and constant reminders of last month's horrific Metro crash penetrating our daily consciousness, how is it that the Federation can put their faith in a mechanical system that would be safe enough to guide drivers who cannot see down our roads and highways?

The only explanation I can come up with is summer silliness!

Clicking Is for Bats

PennyRdr — Mon, 13 Jul 2009 15:23:00 GMT

I am usually the first person to support training for people who are blind. I worked as a rehabilitation teacher for several years, and I thoroughly enjoyed teaching people who were new to blindness how to cook, read and write braille, and make use of assistive technologies. I encouraged all of my students to enroll in orientation and mobility training so they could become proficient and safe cane travelers, and several of my students, who saw how comfortably I traveled through the built environment with my guide dog, went on to get guide dogs of their own. I have a master's degree in special education, and I believe in life-long learning and in learning to do virtually anything that one can do safely. I cheer for mountain climbers like Erik Weihenmayer, I am blown away when I read articles about people who are blind who have medical degrees, sky dive, or engage in other unconventional (for people who are blind) activities for employment or recreation. I truly can't think of any kinds of training for people who are blind that I have reacted to negatively, until now, when I read in "Science Daily," about an effort to teach people who are blind to travel using echolocation http://www.sciencedaily.com/releases/2009/06/090630075445.htm. Yes, that echolocation, the kind that bats and dolphins use to find their way through the dark and under the sea. Apparently, researchers at the University of Alcal de Henares are excited about blind people clicking their tongues and making use of the echoing clicks to find their way, even telling the difference between a looming tree and a looming mail box by interpreting the echoes of their tongue clicks as they travel from Point A to Point B and beyond.

This is not a newly discovered capability. I met a man several years ago who told me how, as a 10-year-old, he rode his bike through the streets of his neighborhood while clicking his way across intersections; later, he even traveled around on his college campus and, apparently, amazed everyone he met with this daring clicking prowess. A young man named Ben Underwood received much positive attention during his all-too-brief life for his echolocation abilities, and Daniel Kish is the only blind person, as far as is known, to ever earn a certificate that qualifies him to guide other people who are blind while finding his (and their) way using echolocation. These people have taught the skill to themselves, and I suppose that if it works for them, then echolocation is a perfectly acceptable method of traveling around and identifying, and avoiding, objects in their way. But, even though the scientists maintain that people trained in echolocation may rival bats in their ability to orient themselves by emitting clicking noises, I think it is a mistake to train vast numbers of people who are blind in the skill.

Do we really want to encourage this kind of navigation when guide dogs and white mobility canes - which impart quite a bit of information via audible taps, work perfectly well?

As a formerly visually impaired child, I can tell these scientists that I would have never left the safety and anonymity of my playpen if I had had to use echolocation to find my way around, because as a child, a teenager, and a young adult, I would have done jut about anything to keep from drawing attention to my difference! Many people know the story of how I fell down all the stairways on my college campus before I finally decided to learn to use a white mobility cane, and although the cane was unbelievably liberating, and I enjoyed my newly acquired independence when I returned to campus after a month of orientation and mobility training during the summer between my sophomore and junior years, there were definitely times when I left the white cane behind and chose sighted guidance, especially if a boyfriend was involved, because I did not want to be thought of only as "The Blind Girl!"

With maturity, I grew more comfortable with my blindness and my mobility cane, and eventually I got a guide dog without whom I have never wanted to be again. But still... The rest of the world already thinks of us as weird enough! Why draw attention to our dis-ability by utilizing methodologies that really do make us seem peculiar?

People who are blind may not like to hear it, but it's true that it's not all that hard to make fun of us. Why else would Saturday Night Live derive such enjoyment from making fun of David Patterson? Why are there all of those blind jokes out there? (You know the ones I'm talking about.) Why is it so hard for people who are blind to blaze trails, find jobs in other than the so-called "blind-friendly professions, or escape so many eager-to-grab-us hands when we are simply trying to board an escalator? In part, it's because of all those jokes. Like it or not, it's hard for people who can see to imagine functioning without vision, and it's an all-too-human trait to look toward humor to make ourselves feel better about the things that frighten us, and to make fun of the people whom we don't understand. I'm not condoning it or saying that it's acceptable, but it is what it is.

Our teachers and rehab counselors and parents and job coaches spend lots of time teaching us the social skills that we might not otherwise pick up on because we cannot see. Often, parents of totally blind children have to teach their infants and toddlers to hold up their heads and to turn their faces toward a person who is speaking. While children with normal vision imitate others at their dinner tables when they learn to use knife and fork and spoon, children who are blind often need to have these skills taught to them, hand-over-hand. All of the information that occurs via so-called incidental learning is such an essential component of the education that most blind and visually impaired children need to acquire, that schools for children who are blind, and early intervention programs, and agencies who arrange for summer camps and after-school activities geared specifically toward children with visual impairments spend years emphasizing and re-emphasizing these skills, and discouraging the so-called "blindisms" that can exclude children who can't see from the company of other children their age. Our parents and our teachers and our counselors and our friends know that we will not be recognized for all of our skills and capabilities if we dress entirely inappropriately for the events we're attending or the season of the year, or the fashion season of the moment, eat with our hands, wear colors that clash, poke at our eyes, drum incessantly with our fingers, hum to ourselves, or rock back and forth so violently that people sitting on either side of us feel seasick. People who are blind cannot get ahead, most of us believe, if we don't fit in and present ourselves to other people in mostly conventional ways.

So, why teach people who cannot see to find their way by clicking their tongues?

If people think we're weird now, even the most competent and capable among us, how weird are they going to think we are when we walk down sidewalk and country road clicking our tongues to figure out what's in front of us?

Please, renowned scientists from the University of Alcal de Henares, investigate echolocation if you must, but don't encourage people who are blind to adopt the technique for day-to-day travel. Be amazed if you like, but don't waste limited resources developing a curriculum to teach echolocation to people who will then be destined for ridicule and ostracism. It's already hard enough to make our way through the world of slings and arrows and tasteless jokes. Imagine trying to get a job after arriving at the interview with clicking tongue...

Leave the clicking to the bats and the dolphins.

Leading Blindness Organizations File Suit Against Arizona State University, Register Complaints with Civil Rights Divisions at Department of Education and Department of Justice, and Send Protests to Five Additional Institutions of Higher Education

PennyRdr — Wed, 01 Jul 2009 16:56:00 GMT

The major blindness organizations, the ones whose membership consists largely of people who are actually blind and visually impaired themselves, the American Council of the Blind (ACB) and the National Federation of the Blind (NFB), and Darrell Shandrow, a university student who is blind, are suing Arizona State University (ASU) for violating Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act (ADA). In addition, ACB and NFB and Mr. Shandrow have filed formal complaints with the Civil Rights Divisions at the Department of Education and the Department of Justice, and sent letters of protest to Pace University, Case Western Reserve University, Princeton University, Reed College, and the University of Virginia's Darden School of Business. The blindness organizations believe that the universities' participation in a pilot program which makes e-textbooks available for students to use with Amazon.com's Kindle DX discriminates against students who are blind because the e-book player is not accessible.

The Arizona State University administrators who decided to partner with Amazon.com to make books from three major textbook publishers available on the Kindle DX, probably thought they were doing their students a big favor. I imagine they were congratulating themselves for making life so much easier for ASU students: It's much easier and quicker after all, to download a book using the Kindle DX's built-in cellular modem than it is to stand in long lines at the bookstore, or search at the discount web sites like half.com and EBay, or to rummage through those used books bins and shelves. It's certainly easier on one's shoulders and back to carry around a 2-pound Kindle DX than it is to lug an over-stuffed backpack back and forth across the campus, and you don't need to find very much storage space in an already cramped dorm room for a Kindle DX, compared to what you'll need for the growing stack of hard-copy textbooks that accumulates with each passing college semester. E-textbooks are cheaper too. And, you can use the Kindle Dx to download other kinds of information, including PDF files, newspapers and magazines, and all kinds of web content quickly and efficiently. Lots of students are probably thrilled to anticipate the several ways in which the Amazon.com Kindle DX will make their lives easier this coming Fall, and who doesn't like a cool new high-tech gadget to play with...?

One Arizona State student who is not thrilled about his university's participation in the downloadable textbooks project, though, is Darrell Shandrow. Shandrow is a journalism major at Arizona State. He says, "Not having access to the advanced reading features of the Kindle DX-including the ability to download books and course materials, add my own bookmarks and notes, and look up supplemental information instantly on the Internet when I encounter it in my reading-will lock me out of this new technology and put me and other blind students at a competitive disadvantage relative to our sighted peers. While my peers will have instant access to their course materials in electronic form, I will still have to wait weeks or months for accessible texts to be prepared for me, and these texts will not provide the access and features available to other students. That is why I am standing up for myself and with other blind Americans to end this blatant discrimination."

It seems, in the summer of 2009, almost incomprehensible that this situation was allowed to develop. After all, Amazon.com's Kindle DX actually contains software that turns e-text into spoken words, and the civil rights laws that forbid discrimination against college students who are blind and visually impaired have been around for more than three decades.

In early February, when Amazon.com announced that the next release of their e-book player, the Kindle 2, would include a text-to-speech capability, the excitement within the blindness and print-disabled communities was just about palpable. Most of us have been accessing print information with our screen-readers and optical-character-recognition/text-to-speech systems like Open Book and Kurzweil 1000 and 3000 for many years. Knowing that Amazon.com had more than 250,000 books just waiting for us to access instantly with the text-to-speech engine built right into the Kindle 2 was more than exciting. How disappointing it was, then, to learn that although it is possible to enable text-to-speech on the Kindle 2, one has to be able to see the controls to actually do it, because the controls don't speak. People who cannot see a screen need audio information to select and download books, to know which book has been selected, what the configuring settings are and how to change them, and to navigate the on-screen menus. But, the Amazon.com e-book reader's controls are as silent as a page from a printed book.

The blindness community got busy and put together an online petition urging Amazon.com to make the Kindle 2 accessible. The petition is still online at http://www.petitiononline.com/Kindle2/petition.html, and there are currently 744 signatures there.

Amazon.com responded, after a fashion, to the collective urging of the blindness and print-disabled communities. On March 19, in their official Kindle blog http://www.amazon.com/gp/blog/post/PLNK3LOIUHETXJZXJ?ie=UTF8&%2AVersion%2A=1&%2Aentries%2A=0, they said, " We've heard from many of our blind or vision impaired customers who are excited about

Kindle 2's text to speech technology. Some of these customers have asked that we make Kindle even easier for them by adding navigation accessible to the blind. We want to let those customers know that this is something we are working on and we look forward to making it available in the future."

The blog is signed, "The Amazon Kindle Team." I'm glad the team heard us and maybe even checked in at the site of the online petition to watch the online signatures mounting up, and I'm happy they are working on it. I want to clarify, though, that it's not a matter of making the Kindle 2 even easier to use; it's a matter of making the e-book reader possible to use!

Fast forward now to May 6, just a few short weeks after the Team promised to work on making navigation possible for people who can't see the controls. On May 6, Amazon.com released the next version of their Kindle, the Kindle DX. That's the one that six universities are going to give to their students, come the Fall 2009 semester, for the stated purpose of assessing the role of electronic textbooks and reading devices in the classroom. The Kindle DX is bigger than the Kindle 2, and the gray scale is better, and people who can read print are very likely to like the display better, but, and it's a big "but," the controls still don't speak!

It's hard to convince me that it's anything like rocket science to make the navigation controls and the on-screen menus speak, especially when text-to-speech is already built into and working on the device.

Now, let's talk about the universities who decided to become involved in the pilot Kindle DX textbook project. It has been illegal to discriminate against people with disabilities who attend universities where federal dollars are spent for services and programs since 1973! That was the year Section 504 of the Rehabilitation Act became the law of the land. Ever since, it has been, not merely wrong, but actually illegal to willingly exclude a person with a disability, like blindness, from a program or service that every other student can access.

I'm sure that Arizona State University, and the other schools that are involved in the pilot project as well, is an institution that receives some federal funding, but even if it weren't, even if ASU didn't take one red cent from the federal government, it would still be illegal for them to fail to accommodate Mr. Shandrow's needs, because the Americans with Disabilities Act, which was passed nearly twenty years ago, extends the protections granted to people with disabilities under Section 504 of the Rehabilitation Act to every student with a disability at every university, and, actually, in every setting where accommodations are made available to the public.

It's been a long time since 1990, and even longer since 1973. I'll bet every one of these universities employs staff members and operates a disabled students services office to assure that the needs of their students with disabilities are met. And, in case someone in the administration might have suffered a momentary lapse and forgotten about the university's obligations to accommodate the needs of ASU students with disabilities, the Reading Rights Coalition which advocates on behalf of people with disabilities for everyone's right to access electronic information, http://www.readingrights.org/, reportedly wrote to ASU President, Michael Crow, "to explain why adoption of the Kindle DX without assuring accessibility for blind and low-vision students was a violation of the Rehabilitation Act and the ADA," but the university refused to stop the program. So, why is it, I wonder, as do the ACB, the NFB, and Darrell Shandrow, that Arizona State University, and the others against whom complaints have been registered, didn't feel compelled to take Mr. Shandrow's needs into account when they decided to participate in the Kindle DX textbook pilot project.

It is not comfortable to make waves. It's hard enough to be a college student with a disability without drawing attention to that disability every time one encounters another instance of inaccessibility or discrimination. It's expensive to file law suits. And it's frustrating to find, nearly two decades after the Americans with Disabilities Act was passed and more than 35 years after the Rehabilitation Act of 1973 became the law, that people who are blind are still an afterthought in so many situations.

"Oh," we hear when we attend meetings to which we were invited and for which we registered in advance, "I'm so sorry, we just didn't have the time to do the braille.

When I was in grad school ten years ago, the course materials for one of my required classes consisted of blurry photo-copied journal articles, collected over preceding decades. "Oh," my professor said, "I didn't think about you..."

If it hadn't been for the kindness of a classmate who read the endless articles aloud into a tape recorder and described tables and photographs, interpreted graphics and even summarized the gist of several long articles that said exactly the same thing, I would not have been able to access the materials, or to survive the class."

Why, in 2009, is Darrell Shandrow still an afterthought in the minds of administrators who decided to pursue participation in the Kindle DX textbook project? When will it be no longer acceptable to say to people who are blind, "Oh, we didn't think about you."?

Amazon.com, who spent four years on the research and development for the Kindle e-book reader, tells us they're still working on making the Kindle DX accessible and independently navigable by people who are blind and visually impaired. ASU and the other universities who are getting ready to require students in certain classes to access their textbooks on the Kindle DX apparently haven't given any thought to Darrell Shandrow or other blind and visually impaired students, who pay tuition just like their sighted peers, who might want to take one of those classes and download some of those textbooks. When will people who are blind cease to be an afterthought? Just how much longer will we have to wait for our needs, and our rights, to be taken into account?

The lawsuit seeks an injunction to prohibit the university from using the new Kindle DX e-book reader produced by Amazon.com, Inc., because it is not accessible to blind students. Mitch Pomerantz, president of the American Council of the Blind, says, "ACB's involvement in this litigation is based upon our concern that to permit, unchallenged, colleges and universities to require students to purchase the Kindle in order to access all materials for a particular class is blatantly discriminatory toward blind and visually impaired students, and sets a dangerous precedent which other institutions of higher learning could choose to follow.

We must vigorously oppose any such initiative until such time as Amazon, Inc. begins manufacturing Kindle products with full accessibility.

To do anything less would be to turn our backs on the thousands of young blind and visually impaired men and women who are seeking to be productive, contributing members of society by obtaining a college education."

Congratulations to Mr. Shandrow, and to the two blindness organizations, to the Reading Rights Coalition, and to everyone who, I am confident, will work to rectify this discriminatory situation. The ACB and the NFB do not always agree on issues that affect their blind constituencies, but when they can work together, as in this situation, their clout is likely to be considerable. Let us hope that the universities, the federal agencies, and the team at Amazon.com will be persuaded that adopting a technology that excludes people with disabilities from full participation is discriminatory, and therefore intolerable, and building accessibility into the devices we need to use in our daily lives must be a priority, and is always worthwhile. Let us hope that, because of the lawsuit, and the complaints, and the attendant media interest, at summer's end when the fall semester begins, Darrell Shandrow will be carrying around his Kindle DX, downloading books with ease and accessing study materials just as casually and just as efficiently, and at the same time, as his classmates at ASU who are not blind.

Summer Travel: The Air Carrier Access Act and What It Means for People with Disabilities

PennyRdr — Fri, 26 Jun 2009 21:28:00 GMT

Summer is upon us. Some people are traveling to the coast to beat the heat, and others are visiting the tropics to soak up the sun and seek adventure and romance. Still others are traveling to visit family or friends, or to one of the summer conventions that so many of the associations and consumer groups host for people with disabilities and the teachers, counselors, and other professionals who work on disability-related issues. Maybe your job or a job interview will take you out of town. Or maybe this summer's considerably lower air fares are so tempting, you simply can't resist the urge to book a flight! If your summer plans include air travel, you may want to acquaint yourself with the many ways the Air Carrier Access Act affects air travel for people with disabilities.

The Air Carrier Access Act became the law of the land in 1986, four years before the Americans with Disabilities Act made it through the legislative process and into law. The Air Carrier Access Act protects your rights as an air carrier passenger with a disability while you are booking reservations, buying tickets, waiting for a plane, boarding, flying, leaving the plane, and picking up your bags. The Americans with Disabilities Act protects your rights and guarantees your access while you are in the airport. Regulations for the Air Carrier Access Act were issued by the U. S. Department of Transportation (DOT) in 1990, and since then, the regs have been amended several times. The "Wendell H. Ford Aviation Investment and Reform Act for the 21st Century," known as "Air 21," which was passed in 2000, applies many provisions of the Air Carrier Access Act to foreign carriers. And, newly revised regulations for the Air Carrier Access Act became final just a few weeks ago, on May, 2009. (For an informative discussion of newly applicable rules for foreign carriers, visit http://www.miusa.org/newsitems/acaaregs.)

For a helpful overview of your rights as a consumer with disabilities under the Air Carrier Access Act, including how to file a complaint, visit: http://airconsumer.dot.gov/rules/rules.htm

The Air Carrier Access Act is a mandate for air carriers that prohibits discrimination against people with disabilities, on the basis of disability; the law affects all domestic air carriers and foreign carriers that provide flights to and from all airport facilities within the United States and its territories, possessions, and commonwealths. The law states that an air carrier cannot refuse to transport a person with a disability because of his or her disability, as long as that person is qualified to travel on that airline. You are qualified if you are a ticket holder.

The regulations are very specific. They say things like: An air carrier cannot refuse to transport a ticket holder with a disability because airline personnel believe that a person's appearance or involuntary behavior may offend, annoy or inconvenience others. An air carrier cannot limit the number of people with disabilities on a flight, but airlines can require groups of 10 or more people with disabilities who will be traveling together as a group to let them know in advance.

There are several circumstances under which an air carrier can require a person with a disability with certain specific needs to notify the airline in advance, and to check in an hour earlier than what is recommended for passengers without these requirements. If you use a battery-powered wheelchair and you will be traveling on a plane with fewer than 60 seats, or if you will be requiring a respirator hook-up, or if you will need onboard medical oxygen, the regulations specifically allow airlines to require you to notify them 48 hours in advance of your flight if it is a domestic flight, and 72 hours in advance of an overseas flight. Visit http://aeromedic.com/news/uncategorized/air-carrier-access-act-13-2009/ for an informative discussion of newly released rules regarding traveling with oxygen concentrators.

In addition, the airline may legally require you to check in an hour earlier than check-in time for non-disabled passengers. There are specific rules for packaging of wheelchair batteries, and airlines may require some people with disabilities to travel with a so-called "safety assistant," more commonly known as a personal care attendant (PCA). A person who is traveling on a stretcher or in an incubator may be required to travel with a safety assistant, and if a person's mental or cognitive disability is so severe that he or she cannot comprehend safety instructions, then the airline can require that person to travel with a safety assistant, as well. In addition, if a person's mobility impairment is so severe that he or she cannot assist in an evacuation, or if his or her hearing or vision impairment is so severe that he or she cannot communicate in order to receive a safety briefing, then the airline can also require the passenger to travel with a safety assistant.

If the airline believes that you need to travel with a safety assistant, and you disagree, then the airline may require you to utilize such an assistant, but the air carrier cannot require you to pay for the assistant's air travel.

Passengers who use an aisle chair to access the aircraft and who cannot transfer over a fixed aisle armrest must be assigned a seat in a row with a movable aisle armrest. And, there is a requirement for planes with 30 or more passenger seats to equip 50 percent of the aisle seats with moveable armrests.

Passengers who are traveling with a personal care attendant, a reader/assistant, or an interpreter who will be performing disability-related functions during the flight must be allowed to sit next to their assistant. Passengers who are traveling with service animals can request a seating assignment that they believe will reasonably accommodate the needs of their service animal, and the airline must honor that request when possible. Passengers with a fused or immobilized leg must be assigned a seat that provides greater legroom, such as in the bulkhead. Passengers who are seated in an emergency exit row must be able to perform the functions outlined, by the airline, for people sitting in that row. If you cannot perform those functions, or the airline believes that you cannot do so, then you will be required to move to another seat.

If you are traveling on a small plane with fewer than 19 seats, the air carrier is not required to provide you with boarding assistance. If, however, you need assistance with boarding, and you are traveling on a plane with more than 19 seats, the airline is required to use a mechanical lift or other device to provide you with boarding assistance.

Once you're aboard the plane, these are the services with which airline personnel are required to assist you: Opening food packages; assisting with the use of an on-board wheelchair to get to the lavatory; and retrieving carry on items.

Air carriers must accept manual wheelchairs as carry-on baggage. And if a wheelchair needs to be stowed as cargo, the airline needs to assure its owner that it will be stowed upright. A wheelchair user must be given the option to carry removable wheelchair parts in a bag, with him or her. Be aware that baggage liability limits do not apply to an air carrier's liability for loss, damage, or delay of a wheelchair or other mobility aid. Compensation for loss or damage to such devices is based on the original purchase price of the device. Compensation of loss or damage that occurs on international flights, however, is based on the Warsaw/Montreal conventions, which do impose limits on the amount of compensation.

Aircraft with 100 or more passenger seats must make priority space available in the cabin to store at least one, or more folding wheelchairs. Aircraft with more than one aisle must have at least one accessible lavatory. (but be aware that the concept of "accessible" as it applies to accommodations on planes may well have a meaning that is far different from what one usually thinks of as "accessible." The requirements for accessible lavatories, which apply only to planes with more than one aisle, ordered by domestic airlines after April 5, 1990, or delivered after April 5, 1992, and foreign-ordered after May 13, 2009, or delivered after May 13, 2010, are that the lavatory must permit a person with a disability to enter, maneuver within to use all the fixtures, and to exit.) A plane with 60 or more passenger seats must make an operable on-board wheelchair available to passengers for visiting the accessible lavatory.

The Air Carrier Access Act states that people with disabilities who are traveling with service animals must be allowed to sit with them in the cabin of the aircraft. The definition of a service animal in this act is somewhat broader than the definition under the Americans with Disabilities Act. According to the Air Carrier Access Act, service animals can include guide dogs, signal dogs, psychiatric service animals, and emotional support animals. In certain circumstances, outlined in the regs., airline personnel may ask questions to determine whether or not you may claim your companion animal as a service animal for purposes of bringing it onboard the plane with you. For example, you may be asked to show an identification card or other documentation for your guide dog or other service animal. You may be asked how the animal has been trained to assist you with your disability, or what specific tasks the animal performs to assist you. If a ticketed passenger has an obvious disability, and The service animal is wearing a harness, tags, vest, or backpack; or The passenger provides identification cards or other written documentation; or credible verbal assurances that the animal is a service animal, Then the airline should permit the animal to accompany him or her on the plane.

For psychiatric or emotional support animals, airline personnel may require that very specific documentation be provided 48 hours in advance of a flight. Documentation must be current, i.e., not more than one year old. It must be on letterhead from a licensed mental-health professional. The document must state that the person has a mental or emotional disability which is recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV, and state that the animal provides an accommodation that is required during the flight or when the passenger reaches his or her destination. The documentation also needs to state that the professional who is signing it and on whose letterhead it appears is treating the person who claims to need the service animal, as well as the date of his or her professional license, and the state and/or jurisdiction in which it was issued. The document does not need to state the person's diagnosis.

At this time, unusual animals, like pigs, miniature horses, and monkeys, are allowed to travel as service animals. However, the airline may take into account the animal's size, weight, and whether the animal would pose a direct threat to the health or safety of others or cause a significant disruption to cabin services when deciding whether or not to transport it in the cabin, even if the animal meets all the other requirements to qualify as a service animal. And, if there are restrictions on the animal at the final destination, this too would be justification for denying the animal's transport. Snakes, other reptiles, ferrets, rodents, and spiders will be denied boarding, because, the regs state, they may pose other safety and public health concerns. Foreign carriers are currently required to transport only dogs as service animals.

Just as is the case under the Americans with Disabilities Act, the Air Carrier Access Act requires service animals to be groomed and well behaved, and under the control of their owners at all times. If a service animal barks, growls, jumps on people, or misbehaves in ways that indicate that the animal has not been trained to behave properly in public settings, poses a direct threat to the health and safety of others, or poses a significant risk of disruption in airline service, airline employees may prohibit it from boarding.

If other passengers claim to be allergic, afraid, or inconvenienced by your service animal, your rights as a person with a disability will take priority over their objections. The airline will make whatever accommodations they can to assure that other passengers are comfortable. (But, unlike the all too frequent situation with a taxicab driver who claims a sudden allergy to your dog, an airline pilot cannot leave you and your service dog standing on the curb!) If a passenger with a severe animal allergy that rises to the level of a disability cannot travel in the same cabin as a service animal, a carrier may rebook one of the passengers on another flight. Passengers who claim to have a severe animal allergy may be asked for documentation to substantiate the severity of the allergy.

Passengers who travel with service animals may ask for pre-boarding and request a seat in the bulkhead or the location that best meets their needs. Be aware, however, that your choice of seating may not block an aisle or an area designated for evacuation. If the airline cannot accommodate your seating request, then you will be given the opportunity to move to another seat within the class of service that you paid for, i.e., there is no requirement for an airline to move you from economy seating to first class in order to accommodate your needs as a passenger traveling with a service animal.

The airline is not required to ask another passenger seated in your row to give up his or her (limited amount of) leg room in order to accommodate your service animal, so try to convince your guide dog to resist the urge to take up more and more of the available space as the flight progresses. An airline may try to find someone who is more willing to share his or her leg room with your service animal, and often, it's not too hard to find an animal lover who is more than happy to sit next to you and accommodate your dog's needs for sleeping (and spreading-out) room. An airline can voluntarily find you a seat in business or first class that will better accommodate the needs you have as a passenger traveling with a service animal, but it is not required to do so, and now that airliners are so completely full for most flights, you shouldn't count on this pleasant bit of serendipity to occur.

There is no requirement for an airline to provide in-flight services of any kind to a service animal. Owners traveling with service animals must provide for their food, care, and supervision.

In air terminals, airlines must provide animal relief areas and escort services to and from these areas when requested. Be aware, however, that airlines are not required to make any modifications for service animals or the passengers who travel with them that would constitute an undue burden or fundamentally alter their programs.

For purposes of making reservations and booking tickets, airlines must make information and services available to people who use text telephones, whether through TTY, voice relay or other more recently available technologies, e.g., texting via cell phones. Air carriers must make TTY access available to users during the same hours that they make voice telephone services available, and carriers must list their TTY numbers in the same places they list their telephone numbers. If an airline does not have a TTY, then it must list how a TTY user can make contact for purposes of making reservations, booking tickets or obtaining information, such as by voice-relay services. In the terminal, captioning must be available at all times on all televisions and other audio-visual displays that are capable of displaying captions and located where any passenger can be expected to go. Newer video displays and televisions must have high contrast captioning capability. At gates, ticketing areas and customer service desks, information which is relayed verbally to passengers must also be transmitted to passengers who cannot hear at the same time it is communicated to others. This is likely to be accomplished via written communication. Airline personnel are not required to know or use American Sign Language. Of course, this requirement would be applicable only to passengers who have self identified as having a hearing impairment.

On the plane, airline personnel need to communicate with passengers who are deaf and hard of hearing with effective communications so that these passengers have timely access to the information that is being provided to hearing passengers, such as about weather conditions, on-board services, connecting flights, and delays. Airlines are not required to use interpreters. Safety videos must have high-contrast captioning, and captioning must be made available in the languages which airline personnel use to communicate with hearing passengers.

At this time, there is no requirement that entertainment videos be captioned for people who are deaf or described for people who are blind and visually impaired. There is consistent speculation among advocates, about a future Notice of Proposed Rule Making (NPRM) that may, one day, require these accommodations.

The office within the U. S. Department of Transportation which monitors and assures the air carriers' compliance with the Air Carrier Access Act is the Office of the Assistant General Counsel for Aviation Enforcement and Proceedings. This is the office where you should direct any complaints you may have about poor service with respect to your disability, or identifiable violations of the Air Carrier Access Act. To Contact them, you can write the Assistant General Counsel for Aviation and Proceedings, 1200 New Jersey Avenue, SE, Washington, DC 20590, or Telephone 202.366.9342. Visit http://www.dot.gov/ost/ogc/org/aviation/index.html -

According to Blane A. Workie, Deputy Assistant General Counsel, for Aviation Enforcement & Proceedings at the U.S. Department of Transportation, the Department is currently considering issuing several new Notices of Proposed Rule Making (NPRM), some of which may address changes in rules with respect to psychiatric and emotional support service animals, the accessibility of airport kiosks (None are currently accessible for people who cannot see the screen), the accessibility of airline web sites (All have very identifiable accessibility problems), captioning and described video requirements for on-board entertainment videos, and the use of seat strapping for wheelchairs on planes that do not have in-cabin compartments or closets for stowing wheelchairs. Workie says that his office is committed to assuring air carrier compliance with the important disability regulations of the Air Carrier Access Act. He says that his office investigates complaints and fines air carriers when there is evidence of a pattern and practice of discrimination. Airlines can be and have been penalized a maximum of $27,500 for each specific violation of an anti-discrimination rule. He says that the Office will continue working with the airlines and with disability organizations to assure their shared goal of assuring accessibility to passengers with disabilities in air travel.

My research into the Air Carrier Access Act and its rules for air carriers and protections and requirements for travelers with disabilities was considerably assisted by my attendance at an online Webinar, "Understanding the Air Carrier Access Act for Flyers with Disabilities." The seminar was sponsored by the Association for Airline Passenger Rights, http://www.flyfriendlyskies.com/ and the National Network of ADA Centers, http://www.adata.org/ on Thursday, June 25, 2009. I am grateful to the presenters, who included: Brandon M. Macsata, Executive Director, Association for Airline Passenger Rights; Kleo J. King, Senior Vice President of Accessibility Services, United Spinal Association; Jacquie Brennan, Project Director, DBTAC: Southwest ADA Center; and Blane A. Workie, Deputy Assistant General Counsel, Aviation Enforcement & Proceedings, U.S. Department of Transportation.

It is an unfortunate fact of modern life that air travel has lost virtually all of the glamour many of us once associated with flying. Airports are frantic places where getting through Security can be a real nightmare, decent food and courtesy seem to be in ever diminishing supply, flights are cancelled without notice or adequate explanation, and departure gates are likely to change just about the time you arrive, huffing and puffing and trying to catch your breath, at the service desk. Although the usually friendly, but sometimes not, airline employees don't really carry cattle prods as they herd us willy-nilly here and there, in and out, on and off-board, passengers can sometimes end up feeling like cattle, or is it sheep, at the mercy of weather and schedule changes and current events, and who knows what else...

It's best, I think, and others recommend, to continue, as far as one can, to make the best of the situations that can present themselves during an air travel experience. (I'm sure your Mom told you, as did mine, that you can attract more flies with honey than with vinegar, and a smile or a kind word can work like a miracle when you hope to change an attitude or smooth out a tense situation.

But, our moms also told us, or they should have, that the squeaky wheel gets the grease. Know the rights that the Air Carrier Access Act guarantees to you as a person with a disability. Expect the airlines to accommodate you, and if they don't, or if they are reluctant to do so, insist they do. I hope that the summer skies are friendly for you, that the Transportation Security Administration (TSA) workers don't react with terror or annoyance to your service animal, that you don't have to wait long for wheelchair assistance, that all of your bags show up, right away, at the right baggage carrousel, and that everyone treats you with the courtesy and respect and accommodations that you deserve.

Celebrating Service to the Community: Recognizing the Many Contributions of Jamal Mazrui

PennyRdr — Tue, 02 Jun 2009 05:16:00 GMT

On a day when newscasts are dominated by reports of corporate bankruptcies, a plane missing somewhere over the Atlantic Ocean, surges in unemployment, and various other scary, unsettling, and let-me-hide-my-head-under-the-covers scenarios, and the e-mails in my in box are mostly gloomy complaints about this, or that, or the other thing, I am thrilled to be thinking about and writing about some really good news for a change, and that is the nomination of my friend, Jamal Mazrui, for a prestigious award in recognition of his having developed and promulgated exceedingly useful, in fact, for people who can use neither computer mouse nor monitor, essential open-source software applications. Jamal has been nominated for the Google-O'Reilly Open Source Award by a group of software developers and experts in assistive technology and what it takes to make the Graphical User Interface (GUI) accessible to people who can't see their computer screens, who admire his technical capabilities, his tenacity, and his total generosity of spirit, time, and technical prowess on behalf of people with disabilities everywhere. Jamal has literally saved people's jobs. They have called him from every corner of the world, sometimes well after midnight east coast time, where he lives, explaining how their jobs are at immediate risk because company-wide changes in an operating system or newly acquired technology have made what they knew about using their computers to access an application or accomplish a task no longer good enough. As intrigued by problems of access and technology as he is committed to helping others who, like him, don't rely on good vision to work or play or access their environments, Jamal has tackled the problems his callers described and, more often than not, and working on week ends and after coming home from his day job at the Federal Communications Commission, has come up with solutions that work. Then, he has made these software solutions available to anyone who might need or want to use them, free of charge, and with excellent help features and documentation, at the web sites, the "Empowerment Zone," http://www.empowermentzone.com/ and "Non-Visual Development: Promoting Software Development without Visual Dependency," http://testsite.blind-planet.com/.

I have known about Jamal's excellent, free software applications for nearly as long as I have known about computers. As long ago as "Back in the Day," when DOS made the playing fields for using personal computers nearly as level for people who couldn't see their computer screens as for those who could, before the advent and widespread adoption of the Graphical User Interface and Windows.X environments, I visited Jamal's Empowerment Zone for explanations and advice that one didn't have to be a "Techie" to understand, and where people who were blind and visually impaired were downloading software that made it possible to, among many other things, use a computer as a FAX machine (even if you couldn't see the screen), and to find a speech-friendly and efficient DOS shell/file manager, that made it just as easy for people who couldn't visually read their computer screens to send and receive e-mail as the more graphical "NetScape" environment did for people who could.

As technology advanced (and assistive technology advanced considerably more slowly), the Empowerment Zone has continued to be a place where people with visual impairments and print disabilities can find, and access, and understand how to use applications that are speech friendly, and where the technology gurus can meet and collaborate, discuss and disseminate, and create assistive technology and software applications and scripts that make it possible for blind and visually impaired people to work, and to participate in all the informative applications and venues available on the worldwide web..

When I first heard about "open source" and "Web 2.0" from the teenager who explains such concepts to his aging baby-boomer parent, I remember saying, by way of clarifying to myself and to him that I understood what he was talking about, "Oh, like Jamal does at the Empowerment Zone."

"You get it," my son assured me.

A week ago, I downloaded Jamal's latest accessibility solution. It's an application that will make it possible for me to use the latest social-networking tool, Twitter.

If Dan Schorr at 92, and Scott Simon are tweeting back and forth, I was ranting a couple of months ago, then I should certainly be able to figure it out! But, I couldn't master the graphical environment of Twitter, and I pushed it to the back of my mind and the end of my "To Do List," until Gettinghired got a page on Twitter a couple of weeks ago, and suddenly, I needed to be able to figure it out and join everyone else in the Gettinghired community online at Twitter.com.

Now sitting on my desk top and waiting for me to spend some time with it is Jamal's latest speech-friendly product, McTwit! Even though I am not a computer programmer, and "techie" is the last way anyone who knows me would describe the person I am, like so many other people who are blind and visually impaired and print disabled, I can turn to Jamal Mazrui for a solution to my work-related technology challenge. I am relieved. And, Jamal says that he has received more expressions of gratitude for McTwit than any other single application he has developed yet.

A couple of years ago, the American Printing House for the Blind's (APH) Michael McCarty, writing for "Fred's Head Companion," http://www.fredshead.info/2006/06/empowerment-zone_15.html described the Empowerment Zone like this: "Jamal Mazrui has created a great resource for people who are blind or visually impaired. The site is called the Empowerment Zone, the largest public, plain text, organized collection of documents on the following subjects:

accessible education; accessible housing; accessible travel; civil rights; employment; financial advice; funding assistive technology; gender; relationships, and sexuality; health care; HTML, CGI, and Perl; independent living; Java; legal help; political action; popular applications, including Eudora, Internet Explorer, Lynx, Netscape, Notes, Pine, Word, and WordPerfect; rehabilitation; self development; Social Security; telecommunications; [and] Windows. The motto of Empowerment Zone is, helping individuals and communities achieve self actualization and full citizenship."

Since then, Jamal has perfected software that converts nearly any PDF document (They are often totally inaccessible!) to screen-reader-friendly .txt format. He introduced us to Mr. Ed Sharp, a text editor that, among other talents, makes selecting and copying text from one place to another the same kind of routine experience for users of screen readers that it is for people who use a computer mouse. And, to "FileDir," a remarkable piece of software that allows people who listen to the information on their computer screens to manipulate files in ways that even many users of computer "mice" may not realize are possible.

In listing just some of Jamal's many contributions to the community of people who are blind, visually impaired, and print disabled, I have merely begun to scratch the tip of the proverbial "iceberg." In their nominating documentation, Jamal's colleagues, who include Gregg Vanderheiden, Ph.D., Director Trace R&D Center; Don Barrett, Section 508 Coordinator, US Dept. of Education; Scott Marshall, Attorney Advisor, Federal Communications Commission; Rajiv Shah, Computer Specialist, Department of Homeland Security; James Ansley, Management Consultant, Los Vegas; and Jeff Bishop, Software Developer, had this to say about their reasons for nominating Jamal Mazrui as "Best Altruistic Accessibility Author (Triple A Rating," for a Google-O'Reilly Open Source Award:

" Mr. Mazrui has devoted years of tireless, voluntary effort toward developing applications and programming tools designed to increase the accessibility of the Windows computing environment for individuals throughout the world. While largely utilized by
blind and low vision persons today, Mr. Mazrui hopes to make his programs known to the greater public so that many more may benefit. Every piece of software he has developed is completely free of charge to any interested person, and the results of his efforts have contributed significantly to the ability of people who use screen reading software to increase their productivity in the environment of a graphical user interface (GUI), originally designed with visual users in mind. As a Blind person himself, Mr. Mazrui brings a direct understanding of how well-designed software can empower people in a world that tends to be visually oriented.

In a practical sense, this means that there are blind people today who kept
existing jobs after PDFs were widely adopted to disseminate important
information, or who got programmer jobs that were enabled by scripted access to Visual Studio -- a complex, graphically-oriented environment. Due to Mr. Mazrui's commitment to accessibility and willingness to put in long hours, there are blind people throughout the world who have the tools they need for independence at work and at home. His willingness to use his many skills to address the needs of people with disabilities rather than for his own financial gain sets the ultimate example of outstanding character and compassionate , virtual citizenship."

All I can add is, it's about time! Award winners will apparently be chosen by a committee of winners from prior years and other appointees. Winners will be announced at a convention of professionals interested in Open Source and Cloud computing applications (OSCAN 2009)

That will take place in July, in San Jose, CA.

I believe it would be impossible for the committee to identify a more deserving winner. I join many in the community of people with disabilities in congratulating Jamal for his nomination, and in celebrating and expressing gratitude for his many contributions to all of us in the community of people with disabilities.

Thinking about "The Soloist:" Mental Illness and Homelessness, What to Do…

PennyRdr — Wed, 13 May 2009 00:27:00 GMT

When I grew up in a rural community on Maryland's Eastern Shore, I knew virtually nothing about mental illness, and although I heard occasional stories about "a town drunk," who behaved outrageously in public and then slept it off in the county jail, and there were off-hand references to "Cambridge," the home of the closest state mental hospital, mental illness did not touch me or my family in any kind of personal way, and "Do we need to take you to Cambridge?" was just Eastern Shore shorthand for, "Are you out of your ever-lovin' mind?" and never really had anything to do with real deviation from the norm or any kind of realistic picture of mental illness.

My mother had a friend who had actually undergone "shock therapy," in fact in the state mental hospital in Cambridge, and when her friend returned home from the hospital, my Mom took a yellow cake with chocolate icing and spent the afternoon visiting. Later, she told me that she felt sorry for Mrs. R., having to live with a husband who was probably abusive and an unmarried brother-in-law who was, at best passively aggressive, and after that, I don't know if my mother continued to visit her friend or not. the subject of Mrs. R.'s mental illness didn't come up in our conversations again. My mother didn't know what she could do to help. All she could do, as far as she knew, was hope for the best, so that's what she did. And mental illness remained an illusive, relatively rare, never discussed disability that seemed far away and far removed from my day-to-day life. As one of that huge generation of the Baby Boom, I don't believe my early lack of exposure to the topic of mental illness was all that unusual.

I don't know what ever happened to Mrs. R. I know she told my mom she would never return to the hospital for shock therapy treatments again. I hope she didn't have to. Her suffering occurred long before the availability of modern antipsychotic drugs, and who knows if they would have worked for her, or if she would have been willing to put up with their side effects in any case. I doubt that her home life improved in any significant way. Now my mother lives far away; she copes with her own crippling form of mental illness. It's called dementia and attributable to her age and Alzheimer's Disease, and it's the topic for another blog on another day. She probably hasn't thought of her friend for years and years, and I don't know if Mrs. R. ever found any relief or sought further treatment.

I moved away from home, and when I was a freshman in college, there was a girl on our floor who was kind of different from the rest of us. She said she believed in witchcraft, that, in fact, she was a witch herself, and there was a Saturday night in the dorm when she scared a bunch of us to death when she brought us together in a room lit by flickering black candles over a OUIJA board. A week or so after that late-night fiasco, we all heard that she had "cracked up," and then there were hushed references to a "nervous breakdown." She left school, and I never heard of her again. I wonder if she got the help she needed, or any kind of help at all, and I hope she is not a homeless person living on the streets of some skid row in some American city somewhere.

Back in the day, we kept mental illness under wraps. Out of sight, out of mind, that was the mantra. It was the same mantra for most disabilities, but especially for the disabilities with "mental" in their compound names. When did things change, and now that we know seemingly so much more about the diseases that can rob a person of a belief in the possibility of well being that keeps most of us going through the days of our lives, why have so many people with mental illnesses ended up on our city streets, collecting food from dumpsters, dodging rats and crime and each other, turning fruitlessly for respite to drugs and alcohol, finding little peace, little relief, little help? And, what can we do? Anything?

These and other telling questions have dominated my thinking, waking and sleeping, over the past week or so, when I read " The Soloist: a Lost Dream, an Unlikely Friendship, and the Redemptive Power of Music," by Steve Lopez , I couldn't put it down, and I went to see the movie which is based on the book over the week end.

Why did you want to see that movie, my family , who would really have rather seen the new Star Trek movie, were polite enough not to ask. Since they didn't ask, I didn't have to answer, I'm not really sure. The book was one of those books that carries me away. When I wasn't reading it, I was dreaming it, and although the Steve Lopez of the movie didn't exactly match the more introspective Steve Lopez of the book, Jamie Fox's Nathaniel * Anthony Ayers exactly captured the Nathaniel, er Mr. Ayers, of the book, and more. Why is the topic so fascinating for me? Is it because, when I was working in vocational rehabilitation, I knew people like Mrs. R., and like Nathaniel and on the continuum of mental illness in-between and often despaired about how to help them? Is it because depression and various anxiety disorders came home to roost in my own family and my circle of friends? Is it because of the "There but for the grace of God" go any one of us recognition that accompanies citizenship in a modern world where much that we believed in from job security to the reliability of our 401Ks has disappeared, robbing all of us of the basic faith in a future that was supposed to just keep on getting better? Or is it really because mental illness is such a presence in the landscapes of our lives, yet, as a society, we continue to ignore it, and I can't figure out why? In America, there are people sleeping on steam grates and in doorways, people who are obviously in pain, fighting against unseen, but real to them, demons, usually losing those battles, and after our initial shock during the Reagan Administration, at their sudden appearance on our city streets, we have come to expect to find them there, and, unbelievably, take their presence for granted. In the mid-1980s, the state mental hospitals and many of the private psychiatric facilities shrank to microcosms of their former size. They were called "modern-day Bedlams," and "hell holes;" there were countless exposés of patient abuse and neglect; and in an era when government became a widely-held definition of the problem instead of a possible solution, patients were returned to families unprepared and incapable of caring for them and to communities and neighborhoods with few-to-no local facilities that could meet their needs. Deinstitutionalization was the watch word of the day, along with promises about community mental health facilities that seldom appeared in the neighborhoods and never got the funding they needed to handle the masses of former patients streaming onto the streets.

it was wrong to make mental illness an Out-of-sight; out-of-mind phenomenon, but isn't it worse to make it an In Plain sight, but still out of mind phenomenon? And even if Steve Lopez might be accused by some of cashing in on his relationship with Nathaniel Ayers as he profits from the book and the film that cover the ongoing friendship between the unlikeliest of acquaintances, isn't his interest in, and friendship with Mr. Ayers preferable to our own Ostrich-like approach to the presence of mental illness and its disturbingly close relationship to homelessness on our city streets?

What can any one of us do to help the hundreds of thousands of Nathaniel Anthony Ayers' on the streets in our cities and towns? How did this happen? Were things better when society locked people with schizophrenia and bipolar disorder and PTSD and other mental illnesses away in the state mental hospitals back in the day? Better; or worse; for whom? What can any one of us do to befriend any one of the raggedy men and women pulling their shopping carts of belongings down the sidewalks we share, or to keep them safe, or dry, or warm during the winter, or cool during the summer, or fed, or hydrated, or cared for, or able to care for themselves?

These are the questions that have occupied me since I read, an then saw, the Soloist. They aren't new questions for me, but lately I seem to be unable to push the questions back into the background. There are too many Nathaniel Anthony Ayers' out there, there is too little compassion for them individually and as a group, and what with the economy skidding precariously back and forth between Recession and Depression, and two wars, and too many people without access to health care and a polarized society where people seem to talk only to other people who look at life exactly the same way they do, and with newspapers going away (Who knows if a Steve Lopez will even be able to bring his column to the attention of thousands of Angelinos in a year or two?), well it's pretty obvious that the men and women whose mental illnesses compel them to eschew shelter and treatment and the so-called benefits of a "normal life" are going to receive even less attention than they already do.

Has there been any improvement in the availability of mental health counseling or effective or affordable psychiatric treatment since 1970 when Mr. Ayers' ability to cope with the world as he knew it evaporated that would prevent a current student who is just barely hanging onto what we call "sanity" to cope or to get help or to survive? When so many people have even fewer resources than were available to us during the 1970s, I am not convinced that a music student struggling against a looming mental breakdown, at Julliard today would find any more help than Nathaniel found nearly 40 years ago. And what about those people without that all-consuming passion that can offer at least a temporary respite from the demons of mental illness? Are they lost entirely? The homeless man who lived near the same just-outside-the-tunnel spot that Nathaniel often occupied, the man who was beaten nearly to death by thugs wielding baseball bats, and left for dead on the sidewalk outside the tunnel was featured a little more prominently in the book than in the movie. After the ER docs fixed him up and he recovered in the hospital and then for a few weeks in a rehab facility, did he escape the fate of homelessness? No. Once his funding was exhausted, the rehab hospital administrators had no choice but to return him to the very street where he had been living when the attack occurred, still coping-just barely-with some kind of mental illness and even shorter of short-term memory than he was before the attack.

A whole generation of young people in their 20s and 30s has never known a time without homelessness. The topic makes the local news now and then, when outside temperatures soar or plummet, or an unusually brutal crime grabs the headlines, or when families are planning holiday get-togethers and we guiltily remember that there are people living on the streets who won't be participating in holiday celebrations or sharing food and drink around groaning holiday tables. Some of us contribute to the combined-giving campaigns that are announced in e-mails that arrive every autumn, we might even show up at a shelter or a food pantry to deliver blankets or prepare or serve food. Just last week end, I filled a bag with packaged and canned food products and left it next to my suburban mailbox so my postman could deliver it to a local food pantry. I know crafty people who knit hats or gloves and others who tutor the children from families whose addresses correspond to the night-time shelters. We do what we can but we know it's not enough and the problems of people with mental illness who never get any treatment and people without homes who spend their days and nights on our streets remain, in plain sight but mostly out of mind.

Sometimes I run into people who make it a strict policy never to give change to panhandlers or street people, as they are so often labeled. These are the people with the blame the victim mentality who believe that helping people by adding to their accumulated change allows them to actually profit from their condition of homelessness. These are the people who whisper, "Get a job," under their breath-as if it would be easy for a person with a tenuous relationship to reality, and no address, no decent clothes, no regular access to laundry or even bathing facilities, and no resume to get a job! Am I any better, or more helpful than these people for whom I voice such contempt though simply because I offer a pocketful of change or a bag of canned food, or an annual contribution to charity?

I believe we have become too accustomed to finding people with mental illness, people totally out of touch with reality - or perhaps too much in touch with reality - living on our streets. I admire Steve Lopez for recognizing Nathaniel's musical genius and their mutual humanity, and writing about him in the "L. A. Times." His articles awakened a caring and a kindness and a degree of human connection in his readers, and that kindness and that caring and that generosity of spirit allowed Mr. Ayers to tap more tangibly into his passion for music which in turn, allowed him to come in off the violent and chaotic streets of L.A., and, although certainly still mentally ill, to live a safer, sometimes more rewarding life, inside a LAMP apartment, and later to spend his days at a LAMP music studio. Steve Lopez did a good thing, actually a whole series of good things, by connecting with Mr. Ayers in the first place, by writing about him, and continuing to write about him, by trying to find ways to help him, by appreciating him, befriending him, and allowing us to get to know them both. If we read the book and see the movie and fail to grasp the essential point that the hundreds of thousands of Nathaniel Ayers are each our responsibility, and getting them off the streets into safe environments that can meet their needs is a cause that deserves the fervor of revolution, then we will have missed an opportunity to make changes that should have occurred several decades ago.

According to the National Alliance on Mental Illness (NAMI) schizophrenia affects over two million American adults, which is about one percent of our total population aged 18 and older. Schizophrenia affects twice as many people as AIDS. There are treatments for schizophrenia, and they have varying degrees of success for people who are affected by the disability. Steve Lopez led me to believe, as a reader of his account of his experiences with Mr. Ayers, that his friendship was as effective a treatment for Nathaniel's schizophrenia as medications might have been, and in any event, Mr. Ayer's disastrous encounters with drugs and other psychopharmacological treatments had predisposed him long before to refuse any and all treatments that involved medications. Friendship may not be immediately in the cards for us or the homeless people we encounter as we walk down city streets, but kindness is one aspect of friendship that, it seems to me, is doable, for any one of us as we make our way through our lives.

Offering shelter and respite and health care and hope is a federal, a state, a local, and a personal responsibility in a country that claims to subscribe to the loftier truths of brother and sisterhood and justice for all. In the spirit of "Nothing about us without us," visit the web pages of the National Alliance on Mental Illness http://www.nami.org/ and learn about proposed legislative and in-community solutions. NAMI is an organization of people with mental illness and those who care about them. NAMI knows that there are no one size fits all treatment programs for the millions of individuals who struggle to conquer the illnesses that result in their disabilities. NAMI also believes that each one of us is responsible in some way for every other one of us, and NAMI believes that we can and must end homelessness.

On April 24, when the movie was released, Mike Fitzpatrick, NAMI's executive director, said, "The movie will help humanize people who live with schizophrenia and

are homeless. It will help people look beyond stereotypes and create better understanding of the challenge for treatment and recovery. The mental health care system is in crisis. After people exit theaters and leave popcorn behind, we want to translate new awareness into action."

A Google search led me to the blog of someone who identifies herself as Dr. Debbie http://drdeborahserani.blogspot.com/2009/04/schizophrenia-and-soloist.html. I found her suggestions for what to do when you encounter a person who is homeless sensible and sensitive:

Make eye contact. Smile.
Consider giving supplies, like a small plastic bag of toiletries, snacks, food or grocery coupons.
Donate your gently worn clothes to a local homeless facility.
Watch your words. Don't call people who are homeless "bums," "transients," or even "the homeless." They are still people first.

If you want to do more, consider volunteering.

Read Steve Lopez's book. It's available at your local library and bookstore, and I found it at the NLS digital download site as well as at BookShare.org. Watch the movie; it's playing everywhere right now and will certainly be available on DVD later for rent and purchase. There are interviews with Steve Lopez all over the internet, and you'll find two at http://wamu.org/programs/dr/09/03/16.php and http://www.cbsnews.com/sections/60minutes/main3415.shtml.

I found reviewers of the book and the movie describing both, over and over again, as "poignant and ultimately hopeful," and I agree. The hope won't be realized unless we act to replace homelessness and hopelessness with kindness and action, as the watchwords for our time.

Remembering Barry Levine

PennyRdr — Sat, 02 May 2009 03:54:00 GMT

In March, I attended a multi-day meeting of a committee which meets annually to advise the National Library Service for the Blind and Physically Handicapped (NLS) concerning equipment, distribution of books and other reading materials in alternate formats, and the most efficient ways to get materials to members of their reading public. The committee has met once or twice a year in Washington, DC, for many years, and many members of the blindness community and the organizations who represent them have rotated through that committee and its annual meetings. The committee always meets at the NLS main headquarters on Taylor Street, and committee members always stay overnight at the same hotel. When the hotel's maitre de generously volunteered to walk me and a companion to a nearby restaurant and help us cross Connecticut Avenue, he began talking about how long the hotel had been hosting committee members who came to these meetings and reminiscing about their various capabilities and attitudes. He asked me about "that nice man with the big dog." He couldn't remember the guy's name, but he knew the dog was Patrick.

"Do you know him?" he asked with a smile in his voice.

I knew immediately that the very nice man he was remembering was Barry Levine.

You're so right, I told him, Barry is the nicest guy.

Yes, and so smart, and so kind, my new friend went on.

I had to tell him that Patrick, Barry's guide dog about whom many of us had heard some very funny stories over the years, had passed away last winter.

My new friend was sad about Patrick's loss and he asked me to please pass along his condolences to Barry the next time I saw him.

I promised I would and added it to the store of topics I planned to talk about with Barry in July when I expected to see him at the American Council of the Blind annual convention.

Now those conversations will never take place.

On Wednesday night, April 29, Barry had a massive heart attack and died. He left all of us who knew him and loved him and remembered him shocked, disbelieving , and bereft.

There are so many positive things that many will say about Barry when they describe him and his many contributions to the community of people who are blind, to his beloved Illinois neighborhood, to his wife, Phyllis, and the daughters who were so important to him. All of these lists of remembrances about his commitment to family, and the various committees on which he participated and advocacy efforts on which he worked so tirelessly will enlighten people who didn't have the pleasure of knowing Barry, to some extent about the kind of guy he was. But the over-riding concept I want to somehow share with Barry's friends and family members and colleagues and even people who didn't know him is how sad and lonely the world now seems without Barry's humanity. If there was ever a person who connected better with the other people who entered his sphere of connection, I have not met him or her. When you were with Barry, you felt acknowledged and listened to and valued more than you did with practically anyone else.

Perhaps this had something to do with his training as a counselor and his belief in "Functional Therapy (which was also his e-mail moniker), but I think it was more likely because Barry was that rarest of human beings, a true humanist, a person who knew that every one of us has contributions to make, gifts to give, experiences to share with every other one of us, and it's always worth our time to discover each other's worthiness and to acknowledge and treasure one another simply because we are each human beings. That's why the hotel maitre de remembered Barry so fondly even though it had been years since Barry and Patrick had stayed at that hotel: Because Barry made him feel just as special as he made everyone else feel with whom he had a conversation, an encounter, a drink, a meal, a shared e-mail existence. If Barry spent time with you, you knew he cared about you, simply because both of you shared the same universe and breathed the same air, and even if you were both in a hurry, rushing off to be somewhere you were supposed to already be, you felt better for having shared even a minute of Barry's time and attention.

Many who are blind and visually impaired, as Barry was, will miss his attention to the access issues that motivate so many of us who can't simply pick up any old book and read it, attend any old movie and follow it, read any newspaper we want, access any internet node that strikes our fancy. Don't leave us out just because we aren't print readers, he said to the librarians, the movie studios, the internet providers, the publishers, the writers, the media moguls, the FCC, the senators, and the congressmen and women! Yes, we all chimed in, don't leave us out! Listen to us! We count too! When Barry attends those late-night, mid-week committee meetings and when he persuades people who have never thought about disabilities before that our needs make sense and can be included even when budgets are drawn up, he speaks for us too!

Now someone else will have to make the time for those library board meetings and the committees and the teleconferences. We won't do as good a job, but we'll do our best because Barry taught us that even things that are hard to do and even people who might initially write us off are worth our time and attention and persuasion.

Certainly the people who came to him for counseling that was based on shared humanity and a belief in practical solutions must be feeling so alone today. And his children. There's no one who ever talked with Barry for even a minute who didn't know about his family and how proud he was of his children. And, Phyllis. If others of us could have partners who described us with such love and respect and admiration, there wouldn't be any divorces or failed relationships. Sharing my condolence with Barry's clients, his colleagues, his daughters and his wife seems so inadequate, but I don't know what else to say. I am so sorry.

Barry, all of us who knew you and were lucky enough to spend time with you are feeling forlorn. You left us too soon. We all have those dangling conversations in mind, the ones we won't be able to carry forward with you.

We will remember your humor. What a great sense of humor you had! And what a wonderful writer you were! Yours are the stories I included when I was "Braille Forum" editor that I will remember with such pleasure.

We will remember your commitment to an accessible world and a free exchange of information.

Mostly we will remember your humanity. Thank you for teaching us how much more important the ties that bind us together are than the minor differences that can keep us separate from one another. Rest in peace, my friend, and thank you for the pleasure of your company.

Afterward: One of those dangling conversations that didn't get completed is the one I planned in which I would try again to persuade Barry to blog for Gettinghired.com. I know you're busy, Barry, I would say. But I miss reading your writing, and I want to introduce you to other people who haven't had the pleasure of experiencing your humor or being converted to the issues you are passionate about.

Here is one of Barry's articles that we published in the ACB Braille Forum in January of 2002. Enjoy a trip back in time when worries about finding work, keeping jobs, protecting ourselves from an influenza pandemic, and all the other concerns of the moment had not yet even occurred to us. You can find other articles by Barry Levine at the American Council of the Blind's web site, http://www.acb.org/ Thank you to the ACB for allowing readers of Penny for Your Thoughts to get to know, a little bit, my friend, Barry Levine.

DOWNHILL SKIING: A VACATION THAT WILL LIFT YOUR SPIRITS!

by Barry Levine

(Editor's Note: Have you ever thought about taking a winter vacation? What would it be like to go sluicing down a snowy mountainside? Especially for a person who is blind?

Last March, Barry Levine wrote to the ACB listserv to share the story of his family's ski vacation. As talented a humorist as he is a skier, Barry's story inspired many who read it to consider the possibility of learning to ski downhill, and his account of an unwanted vacation interloper made all of us laugh -- always a good way to get through a gloomy winter's day!

We share Barry's story with you here, in the hope that fantasies about downhill skiing in the beautiful Rocky Mountains will brighten the days of early winter for all our readers.)

I am writing to recommend to all who read this, a place, a program and an activity.

My wife, Phyllis, our kids, and I have just returned from a week in Winter Park, Colo. We try to get out there at least once each winter to do some skiing. This is something we've done for a number of years now. I love downhill skiing. The National Sports Center for the Disabled (NSCD) makes downhill skiing easy for people who are blind and visually impaired.

Certainly, you can do some downhill skiing in other places. However, the NSCD is well organized and, in my opinion, has some superior instructor/guides. They also seem to be the most reasonable in terms of cost. Skiing Can Be Expensive, But...

Let me address the issue of cost from the outset. I am acutely aware that a ski vacation may be outside the financial means of many folks. We who are blind and visually impaired inevitably spend a good deal of time talking about unemployment, financial difficulties, and the challenges of living on limited or fixed incomes. I don't wish to seem haughty in this regard. However, I am writing this account of our winter vacation to encourage you to place an enjoyable physical activity, like skiing, higher up on the list of life's priorities. It is a magnificent activity. It might be that some folks simply believe that it is beyond their means, when some alterations in priorities and planning might make the experience achievable.

Believe me, I know how expensive it can be;

The Triumph of Susan Boyle and Why So Many of Us Are Still Celebrating!

PennyRdr — Thu, 23 Apr 2009 21:34:00 GMT

My introduction to Susan Boyle's angelic voice came, as it did for so many others, via a link to the YouTube video, http://www.youtube.com/watch?v=9lp0IWv8QZY

(Please visit the site to view this media)

That arrived inside an e-mail message on the Monday following her April 11 appearance on an "American Idol" kind of show that had run on British TV. Although the e-mail was clearly "Off Topic" for the list-serv, not one person on the e-mail list complained! And every single one of us has felt enriched by experiencing Susan Boyle's triumph at the Britain's Got Talent competition ever since! Most of us, I'm sure, sent that link on to friends and family, which accounts for the more than 39 million hits at YouTube already, and saved the link in our "Favorites List for a future day when we know we'll need a spiritual lift!

Why the excitement? Why has the middle-aged woman described by the person who sent me the link as "looking like Mrs. Doubtfire,"with the seemingly incongruously angelic voice touched so many people, and sparked dinner-table and water-cooler conversations all over the country and the world? She truly does have a voice like an angel. And "I Dream A Dream" from "Les Miserables," the song she chose to sing is beautiful, the kind of thing that tugs at the heartstrings of even the most cynical among us. But, that's not all.

I think it's because every single one of us who has ever had a moment of self doubt about the way we look, or sound, or come across, rejoices when we watch the video. We feel as though we are rejoicing right along with Ms. Boyle as we celebrate her courage and her talent, and her triumph; and any misgivings about her appearance, her life in a remote and unsophisticated village in Scotland, her mostly stay-at-home existence of giving care to another simply fall away because her talent erases them all!

When Susan Boyle shows up on stage, many of us, especially those of us who have coped with our own disabilities and dealt with the hurtful words and attitudes of unthinking classmates or malicious bullies, feel an instant empathy with her. She is not beautiful. Her answers to the questions the panel asks are neither sparkling nor sophisticated. It's obvious to those of us who are way too attuned to being misjudged, prejudged, and expected to fail that what is about to happen will make us cringe. We hold our collective breath and clench our fists in anxious anticipation of what we know is about to happen. We are prepared to feel sorry for Ms. Boyle, and, in turn, to feel sorry for ourselves for all the times when someone made fun of us - for tripping, or saying the wrong thing, or getting a horrible grade, or missing the ball, or spilling ketchup on the front of our shirt, or embarrassing a mother or a father or a sibling or an instantly former best friend. When Susan sings that gorgeous song and the audience bursts straight away into jubilant astonished applause, and the judges are nearly speechless with amazement, we are overcome with relief, and vindication, and jubilation, and feeling just as ecstatic as Susan, herself, must have felt at that moment!

Susan's very public triumph seems almost like our own personal triumph, especially for those of us who have worried that our disabilities set us too far apart from what is normal, or that others would define us by our dis-abilities, instead of all the talents and abilities that are a truer definition of the women and men we actually are.

It turns out that our moms were right: You really can't judge a book by its cover!

And, it turns out that what we know, deep down, about love and charity and fairness and hope is also right: We shouldn't judge one another on the shallow, mostly meaningless, and ephemeral outward appearances that can falsely identify another human being as worthy, or not, of our approval. It's character and courage and humanity and talent that matter. It is so good that Susan Boyle has helped us to re-learn those important truths all over again.

It turns out that even a person from the humblest of circumstances, a person who was bullied and cruelly teased when she was in school, a person who struggled all of her life with a learning disability, a person who doesn't resemble a movie star and who hasn't had many opportunities to attract adoring fans (except at Sunday mass and in her village's karaoke bar), a person who has never had a romantic relationship and has never been kissed, a person like Susan Boyle can rise above the low expectations and rolling eyes and restless ennui of people expecting little from someone outside their conception of young and beautiful and able-bodied and desirable, to amaze and inspire and become instantly, astoundingly, desirably, universally admired and appreciated. And, that makes everyone of us who consider our appearance, our age, our abilities, or our skills to be less than extraordinary feel great!

Susan Boyle's achievement and her reaffirmation for each of us of the truths we, sadly, so easily forget as a culture and as individuals are treasures we can keep close at hand on days when a teacher makes us feel stupid, or a store clerk acts as if we're invisible, when we miss the bus and the paratransit van is 90 minutes late, or the employer we were counting on tells us that he is giving the job to someone else, and when the cares of the world and our apprehensions about them make it really, really hard to get out of bed.

Most of us have somewhere in mind a list of the people who inspire us. We turn to them when life is treating us badly and draw strength from what we know of their courage and determination and character. Over the last several weeks, I have been reading Doris Kearns Goodwin's "Team of Rivals," and Abraham Lincoln who overcame a childhood of poverty and deprivation to become a great and compassionate president has joined the group of people from whom I will continue to draw inspiration. Others on my list are Mohammed ali who sacrificed fame and fortune and the promise of title when he stood up for what he knew was right, and later despite the tremors of Parkinson's Disease held the Olympic torch high and brought a stadium filled with athletes to their feet, in awe, and appreciation; and Barack Obama, the child of an African immigrant and a white single mother who overcame an American history of racism and prejudice to become our 44th president less than a hundred days ago. There are ordinary people on my list as well. There's an aunt who never married and sacrificed much to help her brothers support their families and lived at home while caring for aging parents. There's a child who was nearly destroyed by depression, who summoned the determination and the strength to return to college and earn a degree. There's a friend who lost her vision overnight and within three months had trained with a guide dog and returned to her former life of caring for her family and dedicated service to her community.

Though she comes from a life of relative obscurity in a remote village faraway, though she is unemployed and the work of her lifetime was caring for parents during their final illnesses, though her knowledge of romance derives from other people's stories and the music she interprets so beautifully, though she has never been kissed, and her manner of speaking and dressing and engaging others in conversation is somewhat less than extraordinary, though a lack of oxygen when she was born 47 years ago caused her to struggle every day with the affects of learning disability, though she is the kind of person (like most of us) who wouldn't attract much attention in a crowd, and whom the audience and the judges were all too ready to ridicule, Susan Boyle's ordinary life and extraordinary courage and talent lead me to add her to "my list." I want to Thank her for joining the others in my personal reservoir of strength and hope, and becoming one more person to whom I can turn for inspiration and strength when life becomes too discouraging.

Thank you, Susan Boyle, for your courage. Thank you for enduring and surmounting the sorrows that allowed you to sing that beautiful song with so much longing and so much pathos and all of that emotion that traveled straight to our hearts. Thank you for keeping on keeping on and surviving the abuse and the cruelty of uncaring classmates and bullies. Thank you for having the strength to tell others about your learning disability. Your strength gives strength to so many others.

I hope that you will sing other songs for us and that we can look forward to experiencing your beautiful voice on new recordings that may come to us soon.

But, even if you don't record other songs. If you find instant fame and worldwide stardom daunting or unappealing and you decide to allow your appearance on "Britain's Got Talent" and the subsequent YouTube video to remain a once-in-a-lifetime moment of fame, you have already given each of us that treasured understanding about not judging a book by its cover and the importance of character and compassion and resolve, and a transportive experience of hearing you sing, "I dreamed a dream in time gone by..."

Thank you for helping each of us connect again with the dreams that rise above adversity and disability and allow us to become the people we intend to be.

Should You Tell, or Not? How? And When? And, What If You Don't? Then What?

PennyRdr — Wed, 08 Apr 2009 16:43:00 GMT

The title says it all. These are the questions that wake people with disabilities up in the middle of the night. I can remember the what-ifs going round and round inside my head while I wondered if I would ever find a job, and just about every person with a disability I've ever known has wrestled with the likely consequences of these decisions and wondered what to do.

It was the summer of 1968. The lady behind the desk at Snelling and Snelling was flustered. I could tell, she had never met a person who was blind before. She had never even thought about meeting a person who was blind, much less finding that person a job. She needed some eye contact, but I couldn't provide that, and I had already explained, as politely as I could, that she needed to talk to me, not my sister who had given me a ride to her office, because it was I who was looking for a job. My sister, a nurse, already had one.

Thinking about that meeting now, I feel kind of sorry for her. It was pretty unusual back then for a blind woman to come to Snelling and Snelling, looking for a full-time, permanent job, and if that blind woman arrived with a recently-acquired bachelor's degree in International Studies, well, I'm sure the career counselor found the challenge more than daunting.. Jobs had seemed to gravitate naturally toward my classmates. Some had even been recruited months before graduation, right after the Christmas holidays. But, although I had traveled to DC with a friend and we had walked around the Federal Triangle and visited the IRS, and the DOJ, and I can't remember now which other federal agencies we visited, and although I had followed their personnel departments' advice to fill out my FS-171 (the federal job application form back then), although I had some recent job experience (at a summer camp for children who were blind), and I had a decent GPA, and I was articulate, knowledgeable about the Communist bloc among other things, and eager to work, summer was winding down, and no one had come knocking on my door, or responded in any way to my job applications. My sister and her friends thought that Snelling and Snelling might be my ticket to work. They all had friends who had had good luck with the employment agency.

But, within a few seconds of being ushered into the career counselor's office, I knew that Snelling and Snelling was unlikely to find a way to help me find a job.

The only advice the career counselor could give me was, "Maybe if we don't mention your handicap, we'll be able to get you an interview..."

"Then again...," she was thinking out loud, "How would you read the application, or take the test, or follow the written instructions?"

It seemed like I needed to self identify my "handicap," and it was beginning to seem like my disability was much more of a handicap than I had ever imagined it would be when I applied for college, and worked hard during the next four years to keep my GPA up so I could keep my scholarships. I had acquired lots of blindness skills over the preceding couple of years. I felt safe traveling with my white mobility cane. I could cook and clean and cope with the demands of daily life. The one thing I knew for sure was that, since I couldn't drive, I wanted to live and work in an urban environment. That's why I had begun my job search in Washington, DC, where government jobs were rumored to be plentiful. "Blindness" (Actually, back then, I was more likely to call myself, "partially sighted.") was not among the top adjectives I used to describe myself, but after the Snelling and Snelling experience, I wondered: Should I mention it at all?

Eventually, I did get a job. In a federal agency in the small town of Gaithersburg, 45 minutes from the big city of Washington, DC. And, in the typing pool!

Things worked out. Scientists who worked at the National Bureau of Standards, many of whom spoke English as a second or third language, soon realized that, if they sent their dictabelts to the typing pool and asked for me, I could turn what they said into readable prose. A writing job came up within the next year, I applied for it, and got it! I stayed at the federal job for just about five years, and when I left to have a baby, I fully intended to go back to work...eventually!

Eventually, after two decades as a stay-at-home-mom, I did go back to work, and by the time I was ready to join the hoards of other women returning to work in the early '90s, my blindness was called a "disability," instead of a handicap, and there was no hiding it! In fact, knowing that people don't really like surprises, I never even tried!

Suppose, though, that my disability had been one of the "hidden" ones. Suppose it had been epilepsy, or suppose I had a prosthetic leg, well hidden under the subtle folds of a long skirt or the trousers of a pantsuit. Suppose my disability had been a mental or emotional illness, controlled with medications. Or diabetes that required me to test my blood for accumulated sugar several times each day. Would I, or should I have identified my disability? And, if the answer is yes, when? On the application, or the resume? Before the interview, or toward the end (if I thought things were going okay)? And, how? Almost twenty years after passage of the Americans with Disabilities Act and mere months after Congress reaffirmed its protections and safeguards with the ADA Amendments Act of 2008, people with disabilities wrestle with the same old questions when they go looking for jobs in an economy where jobs for able-bodied people are at a premium and the unemployment rate for people with disabilities is astronomical.

My friend, Kathi, is legally blind, but she has a lot of useable vision. In fact, in an earlier era, she would have identified herself as partially sighted, if she mentioned her disability at all. She can read a regular computer screen, and the print in most books. She can sometimes even read what she or others have written by hand. Still, she is visually impaired, and she cannot see well enough to drive.

She told me that, if she makes it through the initial screening process, she refers, rather obliquely, to her disability when she's talking with an employer's scheduler, to set up the in-person interview.

"I'll say something like, Can you tell me where the nearest Metro Station is? I don't drive because I am visually impaired," she told me. "That gets the point across, but without beating them over the head with it!"

By then, the interview is already scheduled, and Kathi is such a fabulous writer, that she usually manages to get the offer of free-lance work she's after, despite her disability .

Here's the important thing you need to know when you're deciding whether, or how, to disclose your disability: If, because of your disability, you're likely to need an accommodation, either during the interview process, or once you've accepted the job offer and you're about to go to work, then you have to disclose the disability, in order to get the accommodation you need. The disclosure is not supposed to impact your ability to get the job, but, honestly, everyone knows that it very well may! It's a fact of life, and most of us find ways to get the interview, and then the job, by encouraging our interviewer, or our supervisor, or our office colleagues to concentrate on our abilities, rather than the disabilities that necessitate our requests for reasonable accommodations.

Surprising a potential employer is not, I and most others have found, a good idea. Suppose you use a wheel chair and you decide not to tell the employer in advance. What happens then, when you arrive at the office building and find that, despite the laws that require buildings and sidewalks to be accessible, there's no ramp, and no elevator? It's better to find out, in advance, about the probable lay of the land, and to figure out how to negotiate the brick pavers in front of the building, and find out where the disabled parking places are located, or whether you'll really be able to work in the office inside the building with the entrance that requires visitors to climb 13 steps, or not!

I asked a friend who has 30 years of experience as a vocational rehabilitation counselor. "What do you tell consumers with hidden disabilities? Do you advise them to disclose their disabilities when they're looking for jobs?"

"It really doesn't matter what I tell them," she told me. "Most of them won't say anything anyway. No one wants to be thought of as the person with the mental illness, or the lady who might have a seizure, or the person in the office who's different! If you can get away with not saying anything, then you probably won't!"

Susan Parker, director of policy development at the U.S. Department of Labor's Office of Disability Employment Policy (ODEP), explained the reticence that many people with hidden disabilities feel about disclosure. At the recent annual meeting of the National Council on Disability (NCD) http://tinyurl.com/cjmped, Parker said, "People with disabilities do not necessarily identify themselves as disabled Particularly with respect to the so-called hidden disabilities, "They do not want to report it out, because [they know that]not all of the individuals in supervisory positions understand that they need to take that information and use it in a supportive way."

And, it's not just uncaring or narrow-minded supervisors who can ruin a perfectly good job for a person who fails to keep a disability hidden under a bushel of non-disclosure. When Laura Yeager, a university-level teacher who has bipolar disorder, inadvertently let information about her disability slip out when she was teaching at a college in Pennsylvania a few years ago, the consequences were horrific. "I got harassed," she says in an article she wrote for the winter 2007 issue of "New York City Voices," http://tinyurl.com/cbrkmz "Particularly by students. My life was, frankly, a living hell."

After that experience, she kept the knowledge about her disability strictly to herself. One day, she screwed up her courage and told her boss. Yeager says, " My boss and I had a great relationship and I felt that I could confide in him. I told him, and it must not have mattered in a negative way because shortly afterward, I was promoted."

Later on, on the first day of a new teaching gig at another university, she actually disclosed her disability to a classroom of students, and possibly because she had become more comfortable with the reality of her bipolar disorder, or possibly because of the more accepting attitudes toward people with disabilities that emerged toward the end of the Twentieth Century and beyond, she found that sharing the knowledge with students made the whole class more comfortable, and several of her students whose disabilities had, heretofore been deep, dark secrets, felt empowered enough to disclose their own disabilities to her.

I talked to several people about this whole dilemma of whether or not to disclose a disability, especially one that is hidden, and two aspects of disclosing disabilities that I hadn't really thought about before emerged from our conversations. One involves the disability of addiction. ted chittenden, who belongs to one of the many disability-related list-servs I inhabit, said, "most large companies routinely investigate potential hires after the interview (to be sure they have no felony drug arrests), and those investigations usually turn up the hidden disabilities, like alcohol or drug addiction, that may not be seen during the interview."

Ted, and others, advise, if you are recovering from an addiction, or if you have a criminal record for any reason, it's best to disclose these facts from the outset.

And, what about the costs of employer-paid health insurance? I have to admit, I hadn't thought about that particular aspect of disability either. My friend who has a prosthetic leg told me, "I'll bring it up, straight out, during the interview, because I think it's only fair to let an employer know that the company's health policy may well have to cover the $10,000 for a new prosthesis that I'm likely to need at some point in the future. If it's going to matter, then you have to self disclose."

And, if it isn't going to matter, then what? Carl Jarvis, told me this story about how he didn't disclose the relatively well-hidden disability of partial vision, and, later on, the not-so-well hidden disability of total blindness, until he got to the interview and there was no faking it. "My hidden disabilities are mine and mine alone," Carl told me. "Besides, I'm never certain which of my idiosyncrasies others would label as disabilities.
When I still had enough sight in one eye to "Pass" as sighted, I never mentioned the fact that I was blind in one eye and limited in the other. I held several jobs without the boss ever knowing my limitations."

"As a fully blind person I have only interviewed for one job outside of the field of work for the blind. This was as a Fuller Brush Salesman. I did not divulge my blindness until I arrived for the interview. The fellow behind the desk was certainly taken aback. He told me that their sales people needed to have a valid driver's license and a late model car. I said that I understood that they did have some walk-in routes and no one had been in my area for at least two years. I went on to explain that I had done some door to door work as a blind man, and I found that it worked to my advantage. He became interested to know how I would handle finding doors, showing product, and filling out order blanks. I had answers for all his questions. After about a year on the job I was actually written up in their company magazine."

If yours is a disability that is far from hidden, e.g., if you're going to be bringing an American Sign Language interpreter with you to the interview, or if you're going to show up in a power chair, or with a guide dog, or a white mobility cane and need some sighted guidance to find the chair that's situated in front of the interviewer's desk, then it's best to let the employer know in advance and up front. It's also best to anticipate an employer's probable misgivings about your disability and to formulate responses to the questions which, though he or she is not allowed to ask specifically about an interviewee's disabilities, will probably be the unspoken concerns that will make all the difference in whether or not you get the job.

Back when not all that many people had encountered talking computers, I brought my lap top to an interview for a graduate school internship that I had applied for. I knew, as soon as I turned on the computer and the JAWS-guy started speaking, that I was going to get the internship! My soon-to-be employer had, in fact, been worried about how I would be able to do the job, and when I demonstrated the effectiveness of my assistive technology, her worries evaporated, and I started the internship, which later evolved into a paying job, the next week.

Sylvie Kashdan, who teaches blindness skills to people for whom English is not a first language, told me that the most important thing a person with a disability can do is to put interviewers and potential employers at ease. "Over my many years of work, I have done both, told in advance and not told in advance. In my opinion, if a person feels she or he is qualified for the job, and the job is not specifically related to knowledge of disabilities, she or he shouldn't identify as having a disability until the actual interview, or the interview may not even happen. Many times when I disclosed beforehand, I did not get the interview. When I have had interviews, I have most often gotten the job. At the interview, the person should emphasize her or his qualifications and the positive things she or he can do on the job, and demonstrate her or his ability to put others at ease (a positive for any job seeker, disabled or not), while not shying away from disclosing the disability, and when necessary doing so in the context of noting the ways in which accommodations can be made to work on the job," Sylvie told me. "I think it helps if the person can sort of casually bring into the discussion examples of positive experiences at school or work and, when necessary of adaptations and accommodations that led to positive outcomes."

"If the potential employer or interviewer won't listen and ask relevant questions about the positive experiences, and give positive responses," she concluded, "Then that working situation is probably not going to be easy for the disabled person anyway."

Miriam Vieni, who worked in the field of counseling and sociology for many years, agrees, as do many of the friends and colleagues whom I asked. Here's what Miriam said, "A blind person should indicate that he or she is blind when making an appointment for an interview. I think that this will help the interviewee feel less anxious
and it will help the interviewer be emotionally prepared to encounter the interviewee. There is some risk in doing this because the interviewer may find a way to get out of the interview. But probably, he or she would find a reason to reject the disabled applicant anyway."

So, should you tell an employer about your disability? The general consensus is that (1) the decision is yours to make. There's no right or wrong answer, but if you're likely to need accommodations either during the interviewing and screening processes, or on the job, then you'll have to disclose your disability in order to receive those accommodations. (2) If your disability is likely to matter to an employer in a significant way, as in the case of my friend who will almost certainly need her employer-provided health insurance to cover the cost of a replacement prosthesis, then it's probably only fair to inform a potential employer of that likelihood. (Fairness is not synonymous with a legal requirement, however, and I believe deciding whether or not to divulge this information is an ethical, rather than a legal, consideration.) (3) If your disability is unlikely to affect your ability to perform the essential duties of a job, and if you don't need any job-site accommodations, then there's no reason to disclose your disability in advance of an interview, during the interview process, or once you've gotten the job.

Even if your disability is one of the obvious ones, circumstances could permit you to avoid disclosing it altogether until you arrive at the job site, and for at least one person I asked, that's exactly what happened. Sharlyn Ayotte explained, "When I was first hired in the high technology sector, the initial communication and the job offer took place over the phone...Sight unseen, so to speak! We discussed technology and experience, and the issue of disability never emerged in the discussion. I felt that topic not relevant,
since they came to me and not visa versa I felt overwhelmingly that I was
qualified for the position and as I owned my adaptive technology, there was
no accommodation required."

"When I arrived at my new employer with technology, the company executives were very surprised, but were very open. On the second day, I received a call from the Executive Assistant to the CEO. My first thought was I was going to lose my dream job, but the reality was different. The CEO wanted to know whether or not I needed any technology to do my job."

"In the end, I was with that business for over eight years in a sales position, and was a good, loyal and reliable employee who worked very hard to demonstrate capability."

If you have a criminal record, then it's wise to let your employer know about it, because he or she will probably find out anyway.

When should you disclose a disability? Most people with whom I spoke believe that there's no need to disclose a disability on an application or a resume. In fact, it's illegal to ask applicants questions about disabilities, age, marital status, religion, or ethnicity. (It is not illegal to ask about citizenship, gender, or prior criminal records. Many of the people I asked mentioned that they do include information on a resume that would imply to a potential employer that they have a disability. For example, my resume lists the assistive technologies with which I have a familiarity, as well as the disability-related organizations of which I am a member. These listings have been advantageous to me, and others, when I have sought employment in jobs where knowledge about disabilities is important.

Charlie Crawford, who has worked as Commissioner for the Blind in Massachusetts, and also as Executive Director of the American Council of the Blind, emphasized how important it is to list our accomplishments, awards, and relevant experiences when we construct our resumes or complete job applications, because one's experiences and accomplishments can say much more about a person than his or her disability ever does. Charlie said, I have always disclosed my blindness to potential employer interviewers in advance. By constructing my resume to demonstrate all the accomplishments I have been fortunate enough to be able to carry out, I have been able to make the point that the blindness is not my main definer."

Nearly everyone I asked advised applicants to disclose information about disabilities that are not hidden in advance of the first job interview.

Many people suggested formulating in advance answers to unspoken concerns about how you will accomplish the essential job duties despite your disability. I was happy that I brought my talking lap top computer to that internship interview. Once when I applied for an itinerant teaching job, I was able to describe, on the spot, how I would use para and public transit to get to and from my students' homes because I had thought about it in advance. A person who uses a wheelchair might describe how easy it is to insert inexpensive risers underneath a standard desk so that he or she will be able to work on the desk top efficiently and effectively. I usually spend at least a few minutes explaining to an interviewer what to expect from my guide dog, and I make sure my dog is well groomed and well behaved. It is reasonable to expect that an employer who may know very little about your particular disability will wonder how that disability will affect your ability to do a job. Anticipating his or her concerns will put both of you at ease and may go a long way toward assuring that you will get the job you are interviewing for.

Joe harcz, a long-time friend from many e-mail lists and phone calls and correspondences, summed up the experiences and advice of many: "If one needs accommodations then one should and, is obligated to identify. If people do not need accommodations and can effectively hide their disabilities, than I suggest they do so. Frankly, I cannot hide mine, but would
do so if I could. The bottom line is the job market is so tight that we people with disabilities need to call upon every resource we have to present ourselves as capable and competent and willing and able to succeed."

Coming Out of the Disability Closet

PennyRdr — Thu, 19 Mar 2009 20:02:00 GMT

If your disability were invisible, and no one could tell by looking at you or listening to you or seeing you walk around that you even had a disability, would you tell people? It's true that, in employment or educational settings, if you need a disability-related accommodation, then the laws require you to disclose the disability and let your school or employer know what kinds of accommodations you need, to take full advantage of their educational programs or to do your job most effectively. But, if you didn't really need any accommodations, or if you could disclose your disability completely privately (so that no one else would have to know), would you disclose it? Would you advertise the ways in which your disability makes you different from other students or other, non-disabled employees?

Here's a link to an article in which the author, who teaches at a university in Texas, describes the advantages of making her slight hearing loss public on the first day of class: http://community.gettinghired.com/blogs/articles/archive/2009/03/19/identity-politics-and-invisible-disability-in-the-classroom.aspx

When I read about her conscious decision to make her disability public and the positive results that decision generated for her and her students, I began thinking about disclosure and the decisions so many of us make about whether or not to disclose something about us that we, or others, perceive as making us different. I thought, sadly, about a man I know who is gay but keeps his sexual orientation well hidden from members of his family. I remembered hearing about a man in his 40s who sat each day, with newspaper in hand at the breakfast table and turned the pages of "The Saturday Evening Post" at night, pretending to be engrossed in reading every page, to keep his family from knowing that he couldn't read, or write, a single word. I thought of the stories I've heard, the novels I've read, and the plays I've seen in which a person of African-American descent pretended to have a different racial identity and, as in "Show Boat" for example, was found out. I thought about kids with learning disabilities who refuse to go to a resource room or a library to take a test in a supportive environment because they don't want anyone to think of them as different. I remembered myself in seventh grade and the lengths I went to, to keep my classmates from thinking of me as the blind girl. All of us who have devoted so much energy to a lifestyle that depends on passing have done so in response to a society that denied basic civil rights to people who are different from the "chosen few" who enjoy the privileges and self satisfactions of power. Passing has been a logical response to a situation where, if people knew about one's difference, a person could be excluded from work, or school, or marriage, or community participation, or acceptance or even personal safety.

Now that there are civil rights laws that forbid discrimination against people whose ethnicity, racial heritage, religion, sexual orientation, and even disability have made them past targets for exclusion, does it make sense to "pass" when we can, to avoid disclosure of the aspects of ourselves that make us different, or to live with a constant undercurrent of anxiety about being "found out?" Have the laws against segregation and discrimination caused a big enough social and attitudinal change to keep people from feeling that they have to hide their differences and when possible, to pass for people they really aren't?

I remember a time when I went to great lengths to make my own disability seem as inconsequential as possible. When I was a kid, I knew that I didn't see as well as my classmates or family members, but I had no idea my vision impairment was really a disability or that it was called legally blind. When I was in first grade, I didn't really know how little I could see, compared to everyone else in my class, and I actually thought that my vision would improve as I grew older. I imagined that, by the time I was sixteen, I would be able to see well enough to get my license and drive my family's car!

Ah, the innocence of youth!

By the time I got to junior high school, I was pretty well aware that, barring a miracle of some kind (not out of the question according to various Sunday School teachers and grandmothers), I probably wouldn't be getting my driver's license. But, I knew one other important thing: I did not want to be identified as the girl who was blind! So what if I had to hold my book so close it touched my nose! So what if I couldn't identify people by their faces! So what if I never had a clue about what was written on the chalk board and I had to listen really, really carefully to what the teachers were saying so as not to miss an assignment or some crucial verbal description of graphical information! I did not want to be "The Blind Girl" in seventh grade! I wanted to be just like everyone else, with the same social life as the popular kids, and the same career goals as the studious kids, and a future defined by normalcy, not disability!

My life activities, all of them, were based on one central premise: I needed to pass. I needed for people to think of me as a regular person. I couldn't bring any attention to my differences, including the fact that I couldn't see more than a few inches in front of my face, I couldn't let anyone know that I couldn't read street signs or even identify who might be driving the car that was picking me up from an after-school activity or a Girl Scout meeting, I didn't want my friends to find out that I didn't really know what Ricky Nelson looked like on my TV screen, and I hid pretty well the self awareness about not being able to read anything I had written an hour after I had put pencil to paper. There were lots of things I couldn't see, but I knew one thing for sure: I was great at pretending!

I believed that I could pass as a person without a disability, and that became my mission in life, beginning in junior high and continuing on until at least my second year of college!

Of course I knew that my friends and classmates and family members knew that I couldn't see very well, but lots of people wore glasses, and I wasn't even one of them, so I believed I could make most people forget that particular aspect of the person I was, especially if I never drew attention to my visual impairment, and I found other ways to do the things that most people used good eyesight to accomplish.

I never asked anyone to read anything aloud to me. I spent about three times as much time as my classmates doing homework, because it always took me longer to read anything written in print. I memorized what colors my friends were wearing each morning in home room, so I could pretend to recognize them later on if I passed them in the hallway. (The days when girls decided to dress like "twins" were not fun for me!) I never talked about what I couldn't see, and I avoided lots of night-time activities because I really couldn't see a darned thing in the dark! I went trick or treating only once, and I never went again because it was so scary crunching through the fallen leaves in the blackness of night, hoping not to fall up or down someone's porch steps or to mortify myself after falling, splat, over a curb.

I passed at school, at church, in Girl Scouts, even at sleep-away camp, and at home! As a very young child, I had figured out that if I told the grown ups in my life that I couldn't see something they wanted me to see, they would be really disappointed. So, I never said I couldn't see a bird, or a plane, or who was driving the tractor in my dad's field. I always pretended that I could.

Looking back on high school from a distance of decades now, I am absolutely sure that most people who knew me then also knew that my visual impairment was quite significant, but I didn't know that they thought of me as a person with a disability. I certainly did not want them to!

It was exhausting to always be trying to pass! But it was my way of life, and I did not want to approach life any other way!

When I went off to college, things changed. I hadn't realized how helpful it had been to live in environments that were totally familiar to me. I knew, from life-long experience in the same house, the same farm, the same schools, the same town, where the steps were and how to travel from point A to points B and C on predictable routes of travel.

Campus was not familiar or predictable! With no mobility cane to identify myself as blind, no one knew that I didn't have a clue about where I was going and few people offered to help. I still have an occasional recurring nightmare: It's mid-semester, and I suddenly realize that I haven't been to Spanish class, or some other class on my schedule, not even once! It's time for mid-terms, and I have no idea where the classroom is or how to get there or what I've missed! It's a terrible dream, born I'm sure from not totally repressed anxiety about not being able to read the semester's new class schedule or any of the course syllabi, and never having any idea how to get where I needed to go on campus. I spent nearly every evening in my dorm because I couldn't see in the dark, and I fell down virtually every set of stairs on campus, at least once.

And, even worse, I had to admit it, passing wasn't really helping me make any friends or letting me participate in any of the non-academic activities at college.

Toward the end of my freshman year – staying in every night allowed me to succeed well enough in my classes to keep my scholarship and make plans for coming back the following year – I met the first person I ever knew who was blind. She came to find me in my dorm. She told me she had heard about me. (I new immediately that I had to do a better job of passing for sighted!) She traveled with a mobility cane. She told me about her own blindness, more significant, for sure, than mine, since she had no remaining vision, and I had enough to read print – slowly – and to see colors and function without a mobility cane, or so I thought. She told me that there were such things as recorded books. She explained that I could get a tape recorder from Voc. Rehab. (They had given me my scholarship, but not much else), and she told me about how she used various readers to keep up with the demanding reading load. She had lost her vision while in high school, but then, she had gone to independent living training where she had learned orientation and mobility skills, braille, and all the other daily living skills that allowed her to function so well, and so independently, as a person who was blind.

It was the beginning of one of the most significant friendships of my life time, and it marked the beginning of the end of my attempts to pass!

Late one afternoon the next year, my friend and I walked downtown to the local sub shop. She held her cane loosely in her left hand while we walked to the shop, with me guiding her, and her holding lightly onto my left arm, sighted-guide style. While we were there, it got dark. When we walked outside, I couldn't see a thing. Worse, I had never received any orientation to the town, and I had no idea how to get us back! My friend transferred her white mobility cane to her right hand, and I took her arm, sighted-guide style, and she guided us both back to campus.

On our way, she explained to me just how things were: If you can't see in the dark, and, you can't use visual cues to find your way, and you can never leave your house at night, then you are actually a person who is blind, and you need to learn some blindness skills!

That night marked the beginning of the end of my lifetime of passing for someone I wasn't. That night, my friend, Ellen, saved my life. If it hadn't been for her and her friendship and her candor, who knows how I would have gotten back to my dorm, and more important, how much longer I would have devoted my time and energy to trying to pass for someone I wasn't. Who knows how long it would have been before I failed a class because I couldn't keep up with the print reading load, or I broke a bone because I forgot about an upcoming curb, or I got hit by a car because I had no idea how to cross a street safely…

The next summer, I went to a training center where I got a white mobility cane, and I learned how to travel as a person who is blind. It was a revelation to me! I could go where I wanted to go whenever I wanted to go there! I could listen for traffic and cross streets independently. I could construct a map of a city in my head and figure out which streets intersected with which others, which ran north and which ran south, and locate any particular address on that internal map in my head. I could travel on buses and even subway trains!

I met other people who were blind, all of them were a couple of years younger than I, they were still in high school; they were there for training in preparation for leaving for college a couple of years hence.

In the evenings, they told me about their lives at the Overbrook School for the Blind. One of the guys, his name was David, read aloud to me from a braille book, it was "Advise and Consent." It was a terrific novel; I still remember it as if I read it yesterday, and 15-year-old David, reading aloud to me from his braille library book, was one of the best narrators I have ever heard, then or since!

David and Dianne and Donna taught me to dial a rotary phone without looking at the numbers. They laughed and joked and teased one another and showed me that being blind was not a tragedy and that not being able to see was nothing to be ashamed of. They showed me a slate and stylus and taught me to operate a Perkins braillewriter, and they taught me to read Grade One braille, and although I never imagined I would one day be using braille on a daily basis, I was grateful to them for their friendship and for all that I learned about being independent and being blind. That summer, I opened the latch on the door in the disability closet. I inched my way out, and I stopped trying to pass as a person without a disability.

It was shocking to my parents to see me with a long white mobility cane, and usually, when I was at home, I parked it in a corner. But, that summer of learning O&M and acquiring other independent living skills was a true turning point in my life, and, afterwards, passing was a thing of the past!

Now, many years later, I couldn't pass if I wanted to! I use a screen reader to access information on my computer, a braille PDA, a color identifier for figuring out which socks are navy blue and which are burgundy, and a guide dog for traveling. I am grateful for the Americans with Disabilities Act and other civil rights laws and the many ways their passage has changed prevailing public attitudes and leveled the virtual playing fields in my life, allowing me to earn a master's degree with much less stress than I experienced in my undergraduate college years, to work and utilize assistive technologies to get my job done, to travel with my guide dog on subway and bus and taxicab, to ask for documents in alternate formats, to retrieve books and other reading materials from the National Library Service for the Blind and Physically Handicapped

(NLS), and BookShare, and the Metropolitan Washington Ear's dial-in newspaper reading service, and to enjoy a life that is just as normal and fulfilling as the one I longed for back in junior high school when I thought the only way to achieve it was by pretending and trying to pass.

Now I have lots of friends who are blind. They are my best friends. But, even better, I know that I don't need to pass in order to make or keep friends, including friends without disabilities. Knowing that I can't see, my friends can accept me for who I am without my having to exert any extra energy to pretend I'm someone I'm not. And, my life is much less exhausting than it ever was before I took those first scary steps with a mobility cane and slipped out of the disability closet, to publicly disclose my disability.

Things are different now, in the 21st Century, than they were when I was growing up in the 1950s and '60s. Laws like the Rehabilitation Act of 1973 and the Education for All Handicapped Children Act of 1975, and its successor, the Individuals with Disabilities Education Act (IDEA) of 1990, and the Americans with Disabilities Act (ADA), also of 1990 have changed the ways we all think about disabilities and guaranteed many of the civil rights we count upon today. Now there are laws that would have required my public school system to teach me to read and write in braille, which wasn't even under consideration when I was a first-grader struggling to learn to read while seeing only one or two letters at a time. (I learned braille in middle age after I couldn't see even one or two letters on a large-print page). Now parents know that their children with disabilities can have rewarding and fulfilling futures and so they are much less reluctant than my own parents were to talk openly about my disability. (I'm pretty sure that my own parents' attitude was, if we don't mention" blind", maybe her "handicap" – that was the word for disability back then! -- won't keep her from having a good life when she grows up. Now IDEA protects the rights of children with disabilities to free, appropriate education in the environment that provides the least possible restrictions to their successful participation in the mainstream. And, although things are not perfect in that mainstream, it's far more likely now than it was when I was growing up to meet other people with disabilities during the course of daily life, and so kids who can't see or hear, or walk independently are much less likely to think of themselves as "freaks of nature," than so many of us were in an earlier time when segregation was the norm. Now there are organizations of people with disabilities that advocate for laws and accommodations and the inclusive policies that allow all of us to live independently and even, sometimes, to express pride in our disabilities and our individual struggles and achievements. Life is better in 2009 than it was when I was memorizing what colors my friends' were wearing, every morning in home room.

But, I'll bet there are still little girls and boys who are expending enormous amounts of energy trying to pass! There are still people, I know some of them, who wouldn't be caught dead using a white mobility cane – and who might be caught dead, not using one! There are still people who won't wear hearing aids even though they need them because they don't want anyone to think of them as hard of hearing. There are lots of people with learning disabilities who never self identify and spend sleepless nights wondering if they managed to pull it off and hoping they won't be "found out!" Maybe it's easier not to disclose a truly invisible disability, at least one that is less visible than my visual impairment probably was, But, I doubt it.

Hopefully, the number of people who feel they have to pretend and they have to pass is dwindling because things are better for people with disabilities, there are laws that guarantee our civil rights and courts of appeal and avenues for complaint and remedy when those laws are broken, and attitudes are more welcoming, and, in more and more places, diversity is a quality of our lives that we celebrate.

It is up to all of us who have disabilities, who have overcome our fear of being different and taken the plunge into self identification, to let our disabled sons and daughters and brothers and sisters know that life can be just as good – and in fact, it's much better – on the other side of the disability closet door!

We need to celebrate the legal and attitudinal changes that have resulted from struggles against bigotry and discrimination. Are we at the beginning of some kind of post-racial, post-disability, post-discrimination era? Not yet. But, we are headed in that direction! If there are Gay Pride parades, and February is Black History Month; if we can all shed tears of joy and relief when America's first African-American president puts his hand on Lincoln's Bible to take the oath of office; if Attorney General Eric Holder and George Wallace's daughter can remember the horrific events of Bloody Sunday and join hands and hearts to celebrate the great distance we have traveled away from that time of hatred and violence; if so many Americans can express pride in the aspects of their identities that make them different, then all of us with disabilities must take the same kinds of crucially important steps toward full disclosure and prideful acknowledgement of our struggles and our accomplishments. It's hard, but it's good to lift the latch on the disability closet door, and there's such a feeling of relief when we come out on the other side.

EEOC On The Job For People with Disabilities: Settlement Reached with Virginia Business Who Discriminated against Job Applicant with CP

PennyRdr — Wed, 11 Mar 2009 13:52:00 GMT

On March 9, the U. S. Equal Employment Opportunity Commission (EEOC) announced a settlement with Advance Stores Company, Inc., which does business as Advance Auto Parts stores in Western Virginia. The Commission had brought suit against the company because of a complaint of discrimination by a young man with cerebral palsy whom they refused to hire in 2004 when he applied for a part-time sales position in their Norton, VA, store. Despite his having successfully completed an internship as a salesperson at Advance Auto’s store in Staunton, VA, the court found that the company declined to hire Jeffrey Scott Sanders because of his disability, and, in fact, that they had hired at least one other person for the position for which he had applied, despite their being less qualified and less experienced than Sanders.

Failing or refusing to hire a person because he or she has a disability violates the Americans with Disabilities Act (ADA) and so, after attempting and failing to achieve a voluntary settlement with the company, the EEOC filed suit in U.S. District Court for the Western District of Virginia.

In addition to the $50,000 monetary relief to be paid to Sanders, as part of the settlement, Advance Auto agreed to provide annual training to all of its managers, supervisors, and employees in its Norton, VA, store; to post an employee notice regarding the settlement; and to report to the EEOC any allegations of disability discrimination by job applicants at the company’s Norton location.

Five years seems to this writer like a long time to wait for justice, but, on the other hand, it is good to know that the Equal Opportunity Employment Commission is available to fight for our civil rights under the Americans with Disabilities Act and to publish summaries for the settlements they reach on behalf of people with disabilities who have experienced employment discrimination because of their disabilities or perceived disabilities. Check the EEOC's web site for news and publications regarding employment, and employment discrimination. The publications that the agency prepares are directed, not only at people with disabilities who need to know their rights in employment-related situations, but also at employers, who have rights and can benefit from the agency's guidance, as well. For example, one publication available at www.eeoc.gov is titled, "The Americans with Disabilities Act: Applying Performance and Conduct Standards to Employees with Disabilities." If you, or someone you know feels that he or she has been discriminated against on the basis of race, ethnicity, religion, gender, sexual orientation, age, or disability, don't hesitate to contact the commission for remedy and relief.

EEOC representatives are available to answer questions, provide guidance, and assist people with disabilities and others between 7:00 a.m. and 8:00 p.m.

Eastern Time. An automated system with answers to frequently asked questions is available on a 24-hour basis. Reach EEOC: By phone, toll free:

Voice: 800.669.4000
TTY: 800.669.6820
You can send e-mail to the Commission here: mailto:info@eeoc.gov

Include your zip code and/or city and state so that your email will reach the appropriate office.

You can find the field office closest to you here: http://www.eeoc.gov/offices.html