September 2007 Edition - Access Press by Access Press

www.accesspress.org History Note

Inside

“Once you begin looking for disability, it’s everywhere.”

■ Unions for PCAs?—p. 3 ■ Duluth Conference—p. 9 ■ What is IRWE?—p. 12

— Fred Pelka Page 2 Nonprofit Org. U.S. Postage PAID Mpls. MN Permit No. 4766

Volume 18, Number 9

Minnesota’s Disability

Community Newspaper

September 10, 2007

‘Unfair’ News Coverage By MN Daily MN News Council Upholds Two, Denies One Complaint by Sarah Bauer plaint that the review was unfair in how it described the character and activities of Ms. Newman.

in the review, as well as the location of her residence, was unfair. The vote was 10-3, with one abstention.

Newman, known for her colorfully decorated home in South Minneapolis, complained to the News Council after she saw the May theater review that contained what she said were offensive descriptions of her character. Newman complained that her inclusion in the article was “politically incorrect” and “cheap.” Newman also complained that the use of her first and last Artist Mari Newman sitting on the front porch of name in the article, as well as her house in Minneapolis. the location of her residence, Newman to introduce a review was unnecessary. he Minnesota News of the play “The Mad Woman Council last month upheld a complaint of Chaillot.” The vote was 10- The News Council denied a that the Minnesota Daily was 4. The News Council also third complaint that the use of unfair in using local artist Mari voted 11-3 to uphold a com- Newman’s first and last name

The publishers of the Minnesota Daily attended the hearing, and defended the paper’s inclusion of Newman in its review of “The Madwoman of Chaillot.” “The author, Sarah Miller, drew parallels to real life, where readers could relate to the play and its message…Miller used people from the Twin Cities, including Newman, to speak critically about societies that label people ‘crazy,’” said Editorin-Chief Emily Banks. “The words used to describe Newman were subjective and intended to communicate nonconformity, or extreme eccentricity,” noted Banks.

“There’s an underlying negative tone to this review; it goes beyond colorful creativity,” said media member Kerri Miller. Banks, defending the review, told council members that the review, taken as a whole, is meant to celebrate eccentric, colorful women, like the play’s main character. “The article wasn’t meant to attack Ms. Newman,” said Banks. The Council members agreed that Newman, whose home and art has been featured in past news coverage, is a public figure. “Newman’s history of being in the media spotlight made her a public figure subject to public critique,” commented Banks.

However, most Council members believed that the inclusion of Newman in the theater review was unnecessary. “I always tell my journalism students, ‘Never forget that you’re writing about real people,’” said media member Steve Schild. “I don’t think the Daily did that here.” Al Zdon, a public member who voted to deny all three complaints, did not think the review was unfair. “I don’t see a problem with what the Daily wrote,” said Zdon. “Perhaps it was not well-written, but that’s fairly common in journalism.” However, most Council members believed that the inclusion of Newman in the theater review was unnecessary. Unfair - cont. on p. 14

Leaving A Message With The FCC Blind Customers File Complaints Against Cell Phone Industry, Citing Poor Access by Adrianna Montague-Gray

Crista Earl, American Foundation for the Blind’s Director of Web Operations, using a cell phone in front of the group’s New York City office. Washington, DC- Blind and visually impaired customers are taking legal action against the cell phone industry in an effort to improve cell phone accessibility. Last month, 11 customers from across the country filed complaints with the Federal Communications Commission (FCC), which enforces Section 255, the law that requires phones to be designed to be accessible for people with disabilities. Com-

plaints were filed against both the cell phone carriers and manufacturers. “These complaints illustrate a market failure on the part of the cell phone industry to address accessibility,” said Paul Schroeder, VP, Programs and Policy Group at the American Foundation for the Blind. “While some companies have taken steps, consumers with vision loss have few good op-

tions for accessibility, and al- people with vision loss undermost no reliable information stand access requirements, and about accessibility.” if necessary, file complaints. As part of that campaign, AFB There is a growing need for sent letters to leading cell accessible phones given the phone service providers and increasing rates of vision loss. manufacturers asking what Experts predict that by 2030, they are doing to meet the rates of severe vision loss will needs of people with vision double along with the loss. Frequent complaints from blind and visually impaired cell country’s aging population. phone customers include: For people with vision loss, • cell phones do not provide for audio output of informafinding a cell phone with a readable screen or with voice tion displayed on the screen; output of essential features like • the visual displays on most menus or text messages is alphones are hard to read; most impossible. Some com- • numeric and control keys are panies, like AT&T, have taken not easy to distinguish by the lead on providing accestouch; and sible phones. But too often the • product manuals or phone handsets and services are not bills are not available in designed to be user-friendly braille, large print, or other for those who are blind or viformats they can read. sually impaired. Earlier this month, AFB initiated a cam- The complaints filed with the paign called 255 Action to help FCC came from customers in

Florida, Georgia, Colorado, Cali- first appeared on the AFB Web site, and is reprinted with fornia, and West Virginia. ■ AFB’s permission. AFB is a Adrianna Montague-Gray is national nonprofit that exdirector of communication for pands possibilities for people the American Foundation for with vision loss. For more inthe Blind (AFB). The article formation: www.afb.org.

QUOTES FROM FCC FILINGS Problems Purchasing Equipment “In November 2006, I asked for assistance in identifying and purchasing a new telephone. The agent was completely uninformed regarding available phones with built-in accessibility features for a Blind user. Indeed, the representative did not even understand what features a Blind user would need in purchasing a phone.”—Melissa Green, Greeley, CO Phones Features Are Inaccessible “I cannot text message, surf the Internet, or use the phonebook. Additionally, the numbers displayed on the keypad are too small for me to read, thus I have to use the voice recognition feature to call contacts in my phonebook. This poses some limitations, because I can only program in ten names, yet I have many more contacts than this amount.”—Douglas Brooks, Winston, GA FCC Filing - cont. on p. 14

September 10, 2007

heated. It’s great that the Fair offers wheelchair accessible park-and-ride vans (at Oscar Johnson Arena), but there were tons of us using them, and I waited too long in the sun and had to keep dowsing myself with cold water. Hope your own Fair visit was safer. Next month: my tips for safe coldweather travel, maybe I’ll follow my on advice!

Tim Benjamin, Editor

n the last Saturday before Labor Day, I spent the afternoon at the State Fair with a few family members who came all the way from Arizona— and 200,000 of my fellow dehydrating Minnesotans. It was great fun, but I did what I warned everyone about earlier this summer; darn it, wouldn’t you know, I over-

Mai Thor on pg 4 gives us a quick summary of “Instant Runoff Voting.” The article, “No More ‘Lesser Of Two Evils,’” explains it in very simple terms. IRV may make the voting process initially more difficult for the voter, since we will need to plan for what our first, second and possibly third picks would be in any particular political race. But it would also eliminate primary elections; think of the money and effort saved if there

were no primaries. It might even mean that someone other than a millionaire could be elected for political office. Read the article and let us know what you think about Instant Runoff Voting. Will it save costs, offer full participation and bring out more voters? On pg 3 we have a couple articles about unionizing personal care assistants. I’m not sure how unionizing will work, but it’s reassuring to know that the National Council on Independent Living and the Service Employees International Union are working together to look at how unionizing the PCA program will affect the independent living model. It’s a topic that I hope our top advocates and lobbyists will become involved in to make certain that unionizing is in the best interest of the clients, the PCAs, the PCA agencies and

the state of Minnesota. We certainly wouldn’t want the program to become unaffordable for the state, and we surely don’t want to lose the personal care options that we have worked so hard for in Minnesota. Still, we do want our PCAs and agencies to make living wages! I think this whole issue is something that we all need to be involved in to ensure the best outcome for everyone. Please write in and tell us your concerns on this issue, pro and con.

social security disability check (SSDI or SSI). This is very important information to clearly understand before and once you become employed. Read the article, but also contact the Work Incentives Connection, the Disability Linkage Line or Social Security Administration to get complete details on how best to maintain your benefits while becoming gainfully employed. Join the ranks of the taxpayers of Minnesota, and make sure you understand all the incentives that have been built in for The Disability Linkage Line people with disabilities. and the Work Incentives Connection offer on pg 12 an ex- We received a letter (below) planation of “Impairment Re- from an anonymous writer lated Work Expenses” (which is all right at Access (IRWE). These are deductions Press; if you want to write a that can be used to make sure respectful letter to the editor your income other than Social and remain anonymous, we Security is correctly counted will respect that option and so that you stay eligible for the your opinion). The writer appropriate amount of your makes several valuable points

concerning vulnerability, asking how much of our vulnerability do we create ourselves out of our own fear, and how much fear has society created for us by reinforcing our inabilities or limitations to fend for ourselves? I agree with the writer that a fearful person can be spotted by an abuser and may be abused. If you feel strong and stand up for yourself, there is less chance of becoming a target. In the 1940s, Franklin Roosevelt called for a guarantee in America of Four Freedoms: freedom of speech and worship, freedom from want and fear. An Indiana group, at FifthFreedom. org, is working for people with disabilities to also be guaranteed freedom from exclusion. I wish for this writer, and for all of us, the exercise of those five freedoms. ■

History Note

Loss Of Legs Unites Soldiers by the Access Press Staff

ivil war combat veterans who were disabled continued to serve in the Union Army. Most of them landed in the Invalid Corps, a unique military unit organized in May 1863 to meet the Union Army’s growing need for manpower. During its years of service, the Invalid Corps troops enforced the draft, guarded prisoners and vital outposts, protected rail lines and supply depots, and served as military police in cities all across the country. Members of the Corps even escorted President Lincoln’s body home to Illinois.

Robert Armstrong and Mason Myers. Both Myers and Armstrong lost legs at the Battle of Gettysburg—Myers lost his right leg on the first day, Armstrong his left leg on the second day. This photo is

friends and members of [GAR] Post 282.” The caption said that Myers and Armstrong “are neighbors, and even wear the same size of shoe. Now, when their footwear gives out, they buy one pair of shoes between them, and Mr. Myers wears the left shoe and Mr. Armfrom a June 11, 1910, Syra- strong the right.” cuse Post-Standard newspaper Robert Armstrong article, identifying the men as (Source: Historical Times Iland Mason Myers (left-right) Myers, A. J. Pot- lustrated Encyclopedia of the Two of these members were ter, and Armstrong, “lifelong Civil War)

Access Press Co-Founder/Publisher (1990-1996) .................................................. Wm. A. Smith, Jr. Co-Founder/Publisher/Editor-in-Chief (1990-2001) ....................... Charles F. Smith Board of Directors ....................................................... Brigid Alseth, Mike Chevrette, Kelly Matter, Anita Schermer, Tom Squire, & Kay Willshire Editor ......................................................................................................... Tim Benjamin Assistant Editor .............................................................................................. Bret Hesla Office Assistant ........................................................................................... Jordan Selbo Cartoonist ..................................................................................................... Scott Adams Sales/Marketing ...................................................................................... Lance Hegland Production ...................................................... Ellen Houghton at Presentation Images Webmaster ...................................................................................................... Alice Oden Distribution ......................................................................................... S. C. Distribution Access Press is a monthly tabloid newspaper published for persons with disabilities by Access Press, Ltd. Circulation is 10,000, distributed the 10th of each month through more than 200 locations statewide. Approximately 650 copies are mailed directly to individuals, including political, business, institutional and civic leaders. Subscriptions are available for $30/yr. Low-income, student and bulk subscriptions are available at discounted rates. Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. We reserve the right to edit all submissions. Editorial material does not necessarily reflect the view of the editor/publisher of Access Press. Paid advertising is available at rates ranging from $12 to $28 per column inch, depending on size and frequency of run. Classified ads are $13, plus 60 cents per word over 12 words. Advertising and editorial deadlines are the last day of the month preceding publication, except for employment ads, which are due by the 25th. Inquiries should be directed to: Access Press • 1821 University Ave. W. • Suite 104S St. Paul, Minnesota 55104 • 651-644-2133 • Fax 651-644-2136 E-mail: access@accesspress.org • Web site: www.accesspress.org

Letters To The Editor ... It’s Your Fear that Makes You a Target I’m really disappointed in the responses from the last Access Press issue regarding whether or not people with disabilities are more vulnerable to assault. [“Are We More Vulnerable to Assault?” August 10, 2007.] Reading the comments elicited me to ask: why do people with disabilities have so much fear and why have they allowed this fear to stop them from doing the things they like to do? In the hopes of not offending anyone, I offer my personal experiences. I don’t think that I am any more of a target than other members of the commu-

nity when it comes to assault— either physical, verbal, or otherwise. My guess is that when people tell you that you’re worth is less than that of your able-bodied counterparts, you’re going to feel as though you can’t do the same things as others. And when you are told that others should fear you because you’re disabled, then you begin to become fearful yourself. The whole point of someone trying to scare you or insult you is to take power away from you and evoke fear. I’m not allowing anyone to do that. No one should allow it, whether they are a woman, a person of color, elderly, or because they have a disability. Your disability doesn’t make you a target. Your fear does.

Like everyone, be smart. Surround yourself with people you know and trust whenever possible, and don’t be a victim! Live life to the fullest! My disability and the color of my skin could have easily made me a target while growing up in the rough neighborhood I lived in. Today, this could still easily be the case. But I don’t let it. I have better things to worry about, such as the things that I enjoy doing in my everyday life. This includes going to the State Fair this year and eating everything they have to offer on a stick. Anonymous from Falcon Heights

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September 10, 2007

Commentary

Is Unionization Of PCAs The Answer? by Lance Hegland

have many concerns about PCAs being unionized. Certain groups (e.g. Service Employees International Union) are interested in organizing personal care assistants (PCAs) employed in the home health care service industry. Granted, the stated mission is noble: to support the proper training, wages, and benefits for PCAs and thereby improve consumer-directed services. However, unionization would expose consumers and vital community support systems to serious risks. Furthermore, there are a number of unexplored opportunities that could achieve the same objective with much less potential for harm.

I’m unsure how historical union activities and models, plus union visions and goals, will be able to ensure quality and stability for workers and consumers. For example, how does a union model work in a consumer-directed residential environment? Will union practices jeopardize consumer freedom, direction, choice, privacy, quality, and safety? Will a union model make it difficult to avoid inappropriate workers who may pose risk to consumers’ physical and emotional health and safety? Who will be responsible for documenting behaviors that negatively impact quality-oflife? Will poor-performing workers shirk their responsi-

bilities citing union protection? Who will be responsible for providing individual consumer advocacy and management training? Who will be responsible for collectively bargaining with unions: consumers, personal care provider agencies (PCPOs), or the Department of Human Services (DHS), which controls resources available for compensation and benefits? Will consumers and PCPOs become strategic negotiation pawns? Will strikes, walkouts, and picketing be used? Where will picket lines be drawn? At DHS, PCPO offices, or consumers’ homes? Who will be responsible for funding these addiUnionization - cont. on p. 14

NCIL Explains Joint Project With Union Message to NCIL Members from the Group’s President and Executive Director by Kelly Buckland and John A. Lancaster Dear NCIL Members: Many of you have raised issues and concerns about the recent National Council on Independent Living (NCIL) grant agreement with Service Employees International Union (SEIU) to do a joint fellowship to improve and expand consumer-directed personal attendant services. The NCIL Governing Board is aware of and shares those same issues and concerns. It is precisely these sorts of issues that have prompted us to enter into this grant agreement. NCIL has made a conscious choice to work with SEIU to try and shift the focus of their many local affiliates, to increase the availability of consumer-directed personal attendant services, and to work for better pay and benefits for the workers. This choice was advocated strongly by the Executive Director. The Resource Development Subcommittee, the Executive Committee, and the Governing Board have concurred but have expressed strong concerns. In expressing those concerns, the Governing Board has established a NCIL/SEIU Grant Task Force under the Health/PAS Subcommittee to develop a NCIL position regarding these matters, to oversee the project, and to be sure that it does not conduct activities inconsistent with NCIL guiding principles and positions.

als with disabilities that support their independent living needs while recognizing the right and need for personal attendants to organize and have appropriate training, wages and benefits. Specifically, NCIL is providing a fellowship to an employee of a CIL to learn all there is to learn about consumer-directed personal attendant services, and to devise a project with the CIL in their state that will meet the above-stated purpose of the project. If the project is successful in advancing consumer-directed personal care services in Maine, and if NCIL and SEIU are pleased with the results, then NCIL and SEIU may continue the project in the future. NCIL staff will keep the membership well informed on its progress or lack thereof.

NCIL shares your commitment to deinstitutionalization and consumer-driven personal attendant services. This commitment drives this fellowship agreement with SEIU and NCIL. SEIU is the world’s largest union. They are going to fight to preserve jobs, raise wages and benefits, and organize workers no matter what. That is what they do. We believe that it is more productive to engage them and to try and work from within to change their thinking and philosophy, than it is to try and fight their numbers and dollars without dialogue or seeking common issues of concern. It is NCIL’s belief that there is enlightened staff in SEIU’s national offices committed to the purposes of this fellowship and that truly want to support deinstitutionalization and con-

sumer-directed personal attendant services. They need to bring their local affiliates around. What better way to start doing it than with a program where a CIL will work with the local SEIU to achieve what we want? If we are wrong, we will end the fellowship agreement. Again, the NCIL Governing Board appreciates your issues and concerns. We will provide the NCIL Membership with regular updates on the project. Respectfully, Kelly Buckland, President; John A. Lancaster, Executive Director National Council on Independent Living [16 August 2007]

Disaster Preparedness New Publication For People With Disabilities by Vicki Gaylord

hen disasters occur, people with disabilities are often among those most in harm’s way. In many cases this is because the planning and resources in place to respond to disasters and emergencies haven’t made adequate provision for people with disabiliNCIL and SEIU entered into ties. this agreement for the purpose of developing a joint fellow- The new publication, “Impact: ship to improve and expand Feature Issue on Disaster Preconsumer-directed personal paredness and People with attendant services for individu- Disabilities” from the Institute

on Community Integration (ICI), University of Minnesota, seeks to address that need for greater inclusion of people with disabilities in disaster preparedness, response and recovery efforts. By providing strategies, stories and resources of use to disability service providers, advocates, individuals with disabilities, families, policymakers, and interested others, Impact’s disaster preparedness issue offers readers information they can use to help ensure that

when the next disaster or emergency occurs, no one is left behind. The publication is available online (http://ici.umn.edu/ products/impact/201/ default.html) as well as in print. Print copies can be requested by contacting the ICI Publications Office at 612624-4512 or icipub@umn. edu. The first print copy is free; additional copies are $4 each. ■

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September 10, 2007

Catastrophes Can Affect Mental Health

No More ‘Lesser Of Two Evils’

NAMI-MN Offers Resources for Victims

Instant Runoff Voting Offers Hope for Fairer Elections and Shorter, Cheaper Campaigns

by Sue Abderholden

he National Alliance on Mental Illness (NAMI) of Minnesota was shocked by the collapse of the I-35W Bridge and the catastrophic flooding in southeast Minnesota. NAMI joins with people from around the state in sending thoughts and prayers to all who were affected.

for a poor outcome or psychiatric problems are those most closely involved and those with a prior psychiatric diagnosis,” said Anand Pandya, M.D., president of the NAMI Board of Directors and co-founder and president of Disaster Psychiatry Outreach, a charity that provides psychiatric care in the wake of disasters. “Too often those with existing psyNAMI wants to remind the chiatric diagnoses are overpublic that everyone is im- looked in these situations.” pacted in some way by traumatic events such as these, and It is important to note that these that each of us has different types of events can trigger depression, anxiety and postneeds and ways of coping. traumatic stress disorder. In It is very normal to feel anx- people who already have these ious and to feel sadness fol- and other mental illnesses, this lowing such unusual and tragic tragedy may also have an imevents. To move forward, it is pact with an increase in sympimportant to talk about our feel- toms. People may experience ings, take care of ourselves symptoms right away or in the (sleep, eating healthy, exer- weeks to come. cise) and manage our stress Dr. Pandya encourages everylevels. one to be aware of their expo“Those who are at greatest risk sure to news coverage, as chil-

dren and adults alike may be vulnerable to developing depression, PTSD, and other anxiety disorders. Some of the symptoms of depression are: • Changes in appetite with significant weight loss or weight gain not due to dieting • Sleeping too much or too little; insomnia; middle of the night or early morning waking • Loss of energy or increased fatigue; feeling tired despite lack of activity • Feelings of worthlessness, hopelessness or inappropriate guilt • Difficulty thinking, concentrating, remembering or making decisions • Thoughts of suicide or death or attempts at suicide • Persistent physical symptoms that do not respond to treatment—such as chronic pain or digestive disorder Catastrophes - cont. on p. 14

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by Mai Thor

f you keep up with elec- now in the race, your vote goes many elections attract less than tion issues, you have prob- to Isabelle for Round 2.] If a half of eligible voters in part ably heard of the term “Instant Runoff Voting” (IRV). Sample Ballot So, what exactly is it? And Instructions to Voter why is it such a big deal? This article serves as an IRV primer To vote for a person mark the square to the right of that person’s and can hopefully shed more name. light on why IRV may be the You may also indicate one second-choice, and one third-choice way of the future in Minnesota candidate, in case your first choice is eliminated in a runoff, by marking the second or third choice circle in line with those elections. In actuality, Instant Runoff Voting is pretty simple. With our current voting system, the candidate with the most votes wins. With IRV it’s different; a candidate must get a majority (over 50% of the votes) to win. They don’t win just by getting more votes than any of the other candidates. If no one gets a majority, the IRV process drops a candidate and has a run-off. Still no winner? Drop another candidate and have another run-off. But here’s the twist: these run-offs all happen on Election Day as the votes are counted.

alternate candidates’ names. Marking a second or third choice cannot help defeat your first choice candidate. For Governor

Vote for not more than ONE first choice

First Second Third Choice Choice Choice

1 ....... 2 ...... 3 PHIL HOFF .............................................. 1 ....... 2 ...... 3

HOWARD DEAN ....................................

MADELINE KUNIN .................................. 1 ....... 2 ...... 3 1

....... 2 ...... 3 PETER WELCH........................................ 1 ....... 2 ...... 3 THOMAS SALMON..................................

This voter liked Salmon the best, Dean second best, and Kunin third.

A portion of an Instant Runoff Voting ballot from a recent Vermont election. Note that the voter is allowed to choose their first, second and third choice for each office.

candidate now has a majority, they win. If not, it’s on to Round Three, where the candidate with the fewest votes is again out of the race and votes are transferred. Eventually, a winner emerges from the field, and every voter got to cast a It works like this. As a voter, vote in every round of the runyou get to look at all the candi- off. dates and rank them. “I really want Betty to win, but if she Proponents feel that IRV is a weren’t in the race, my next better way of voting than the choice would be Isabelle. And system we currently use. if neither of these were in the Among other things, IRV race, I’d much rather have Bob would save money. IRV comthan Tony.” bines a two-round runoff, so there is no need to have a priAfter these ranked ballots are mary election. Supporters also cast, all the first choices are think this change alone would tallied up. If one candidate gets lead to shorter campaigns, both a majority, they are the win- decreasing the amount of ner. Election over. However, money that is spent on camif no candidate receives over paigning and preventing some 50% of the votes, then it’s on of the negative tactics. Jim to Round Two. During the sec- Ramnaraine from Minneapoond round, the candidate with lis commented, “My biggest the fewest votes is eliminated, problem with the way we vote and those votes are transferred now is the system seems to to each voter’s second choice. result in negative campaigns. [As it turns out, Betty got so By voting day, voters are often few votes, she was dropped left selecting from the lesser of from the ballot. Since she isn’t two evils. Outside Minnesota,

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because people get fed up with candidates.” Other benefits of IRV would likely include higher voter turnout by elimination of a primary, more equal footing for third party candidates to run for seats with accurate tallies of their support, and election of candidates through majority rule in one election. Minneapolis residents recently voted to use IRV in the 2009 local elections. Despite the excitement surrounding this milestone decision, election administrators are wanting to take a bit more caution in implementing this voting system. Cindy Reichert from the City of Minneapolis Elections feels that there is still a long way to go between now and 2009 in order to prepare for IRV. According to her, “Several issues related to laws and rules and the equipment needed to run an IRV election still need to be addressed.” More specifically, Ms. Reichert stated that many current IRV - cont. on p. 5

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September 10, 2007

Parity, Fathers and Sons, And Never Leave A Man Behind by Pete Feigal

Part 2 [Last month we ran excerpts from Pete Feigal’s keynote speech from the Mental Health Parity fundraising event June 15th, 2007, in Philadelphia. Here are more excerpts from that speech.]

’m alive today after 35 years of serious and persistent mental illness and MS. You might wonder why I’m not on the street, anymore, why I’m not addicted to drugs or alcohol, why I’m not in the state hospital, the penitentiary or the graveyard, because that’s what happens to people with mental illness today, in the United States of America, if we slip through the cracks in The System, cracks as big as the Grand Canyon. Shame on us. But that didn’t happen to me, not because I’m stronger or wiser, I was just luckier. Why I’m alive today is because I got the absolutely essential medical help I needed, the right medications and therapy for my physical brain disorder. But there are other essential ingredients to recovery, intangibles that have tangible weight: faith, creativity, volunteering, reclaiming our dignity, having a reason to get up in the morning, focusing our lives, not on our wounds, but on what we love. And the main reason I’m still here, and there’s no close second, is that people were kind to me. That I had family and friends to share my sufferings, and offer me love, wisdom and hope. [I think of] my father who, when in my despair I refused any medical treatment for my illness, sat down next to me on the couch during an argument we were having. He had tears in his eyes. I’ve only seen him cry twice: that day and when his father died. And he said to me, “Pete, I’m not going to fight with you anymore. You are my most precious treasure. I know you’re struggling, you’re hurting, I know that you feel so lost, you won’t even do anything to help yourself. But would you do something for me? Would you take a leap of faith for me? I’ve found a new doctor. And if I go with you to see him, would you do that for me?” What could I do? I was so used to fighting with my dad, but I was helpless in front of his tears. I took that leap of faith and went with him to see that new doctor. I got on a new medication and I started to do better. And that was one of the turnarounds of my illness. And I had a teacher, Mr. Arel,

who taught me about “compassion” back in my little hometown of Pine Island, Minnesota. He came out of the fires of the Vietnam War with a pledge to do something with his life, He became a high school teacher, and he was a good teacher because he taught with passion. And passion wakes us up. It’s no wonder that I’ve become a writer, actor, artist and speaker, because I had a teacher like him. But it was his compassion that saved my life. When I got back from a year stay in a locked mental hospital in 1972, I had gone from being one of the “Jocks” to one of the “Ghosts.” In that year I was gone and felt so broken and left behind and now stumbled through the halls like a zombie. He’d come up about once a week, touch my elbow with his and say, “Pete, How ya doing? What about that new Harley-Davidson Sportster?” And because I loved motorcycles so much, I’d stand up straight, my pilot light would be lit, I awoke from my pain and loneliness and despair and I’d say, “Wo!, Mr. Arel, is that a cool motorcycle! It weighs 500 pounds., does a flat 14 second quarter mile and has 883 cubic centimeters!” And for the one minute that Mr. Arel had before he had to go to the next class, he gave me those 60 seconds, and he’d say.

“Wow, cool, all right” and then he’d go off to class and I’d go off to class, and I’d go down again. A week later he’d come up and go, “Pete, how ya doing? What about that new 500 Suzuki motorcycle?” And I’d go, “Wo!, Mr. Arel is THAT a cool motorcycle.” Even if it was for only one minute a week, he kept me awake, focused on what I loved, not on where I felt broken. Thirty years later, totally by accident, I discovered that Mr. Arel can’t stand motorcycles. He truly doesn’t know the difference between a HarleyDavidson Electra-Glide and a Vespa scooter. Once a week he’d go shopping for his groceries, and as you’d go in the front door (of a building that doesn’t even exist anymore) there was a magazine rack over on the left. And he’d go over and, totally at random, pick up any motorcycle magazine, open it to any page, and memorize the name of a motorcycle, so that next day he could say to me in school, “Pete, how ya doing? What about that new 750 Kawasaki motorcycle?” That’s why I’m still alive. Why I didn’t see the face of God for 35 years was because it was so close. It’s just right there. That’s how we see the face of God every day: in the faces of kindness of the people we meet. ■

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IRV -

Cont. from p. 4

election laws do not apply to an IRV situation, and a thorough review is needed to identify areas of conflict.

on designs that are IRV compatible. Only time will tell if these new designs will maintain the accessibility standards outlined in HAVA and state IRV would dramatically law. change the way ballots are formatted (to accommodate its In 2009, the people of Minneranking system). The optical apolis will set a precedent as scanning machines currently the first Minnesota city to use in use in Minneapolis are not IRV. If IRV preparations get configured to run an IRV elec- held up more than expected, tion. Manufacturers are work- the City Charter Amendment ing to design IRV-compatible equipment for Minneapolis. Ms. Reichert stated, “Our goal is to ensure that whatever equipment we use meets the requirements of federal and state law, including compliance with the ADA and HAVA.” Other issues—that are important but difficult to measure now—are the costs of transition to IRV and edu- by Ann Bauer cating voters. The author describes the sucIRV and PWD cessful use of elec-troshock One of the main concerns for treatment on her son, her ampeople with disabilities when bivalence about the treatment it comes to IRV is how com- even after its success, and her patible it will be with the decision to tell others who AutoMark voting machine. might also benefit from it. She Right now, the AutoMark is quotes a Mayo doctor, who programmed for the traditional urged her to tell the story. “I ballot, not an IRV ballot. recognize the tremendous Manufacturers of these voting stigma attached to this treatmachines that help people with ment,” he said. “But if you disabilities vote independently wish to help other parents of and privately are also working

(that voters approved last year) allows the deadline to be postponed to 2013. It’s a very good possibility that IRV will be coming to St. Paul in the near future as well. Let’s hope many of the unanswered questions posed above will be answered by the time it does. ■ Mai Thor is the Voting Outreach Advocate at the Minnesota Disability Law Center.

On the Access Press Web Site

The Body Electric One Family’s Journey with Electroshock Therapy such adolescents, you should disclose the fact that, despite its stigma, electroshock is one of the most effective treatments in medicine; that it has been in use for more than 70 years; and that its benefit-torisk ratio [for acute patients] is very favorable.” Read the story online at www.accesspress.org. ■

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September 10, 2007

Upcoming Events To list an event, e-mail access@accesspress.org 14th Annual Heel and Wheel Walk September 15 Hearing and Service Dogs of MN, a local nonprofit which has been providing Assistance Dogs to deaf, hard-of-hearing and people with physical disabilities for nearly 20 years, will be hosting its 14th annual Heel and Wheel fundraising walk on Saturday September 15th. Live music, doggie dancing, caricatures, face painting, a dog talent contest, and lots of interactive games for people and their canine companions will take place. Details: Registration and entertainment begins at 9:30 a.m. with the walk commencing at 10:30 a.m. at Phalen Park Pavilion in St Paul. FFI: www.hsdm.org. ‘When I Wish’ Gala September 15 When I Wish is a fundraiser for Opportunity Partners to help people with disabilities. Opportunity Partners provides employment, education and housing for people with developmental disabilities, autism, brain injury and other special needs. This year’s theme is “A Night of Magic,” and will feature a medley of entertainment including fire dancing, juggling, magic acts and live mannequins. The event will also offer interactive games, a live and silent auction, and dinner by D’Amico. Details: Saturday, 5:30 p.m. at International Market Square, Minneapolis. FFI: Cindy Green at 952-9122492 or e-mail events@ opportunities.org.

Tapemark Women’s Golf Event September 17 The 13th Annual Tapemark Charity Women’s Golf Event is sure to be a fun day of golf, helping to make a difference in the lives of people with disabilities. Entry in women’s amateur pairs includes golf, lunch buffet, silent auction, an awards dinner and great merchandise packages. The event once again benefits children and adults living with developmental and learning disabilities, and their families. Details: Monday, 1 p.m., Southview Country Club, W. St Paul. FFI: www.womenstapemark. org or 651-552-5639. ‘Diverse Voices’ Play Opening September 17 Inside the Gate, a new play featuring a student cast, illuminates the issues and stakes of the 1988 and 2006 protests at Gallaudet University, a campus specially designed to educate and serve America’s deaf. The 1988 Gallaudet protests were a crucial point in deaf culture and deaf pride. This performance will be constructed with a “universal design” so both deaf and hearing audiences have equal access to the action onstage. Details: Rarig Center’s Stoll Thrust Theater, West Bank, U of M, 330 21st Ave. S, Mpls. 7:30 p.m. Free, but space is limited.

‘Realize Your Power’ Workshop September 22 If you or someone you care about has an intellectual or developmental disability, you know that laws and public policy at all levels of government can create opportunities – or challenges – for people with disabilities. Learn how to tip the scales in favor of opportunities at Realize Your Power: Prepare, Practice, Participate. Details: Saturday, from 9:30 a.m.–2:30 p.m. at St. Hubert’s Church, 8201 Main Street, Chanhassen. Residents of Carver and Scott counties as well as other communities in the south and west metro are invited. Free, but registration encouraged. FFI: 952-920-0855. Game Day Social September 25 Game Day is an opportunity for individuals to socialize and have fun playing various interactive games. MCIL offers different card and board games for people to enjoy, such as trivia games, Uno, Cribbage, Sorry, Cranium, social skills games, Apples to Apples, Bunco, Sequence, and many more. If these games do not suit your interests, you can bring your own favorite game! Details: held every last Tuesday of the month from 1– 3 p.m. 1919 University Ave. W. in the basement-level large conference room. RSVP to Julie at 651-603-2002 or juliew@mcil-mn.org.

NAMIWALKS for the Mind of America September 29 Saturday, September 29th is the inaugural Minnesota NAMIWALKS for the Mind of America, a 5K Walk to fight stigma, and raise funds for NAMI, the National Alliance on Mental Illness. “The Walk brings people together to raise awareness that mental illnesses are treatable medical conditions, and that there is help and hope for children and adults with mental illness and their families,” said Sue Abderholden, Executive Director of NAMI Minnesota. Details: Minnehaha Park, Minneapolis. Registration starts at Noon and the Walk begins at 1 pm. FFI: www.namimn.org and click on the NAMIWALKS logo or call 651-645-2948. Inaugural VISIONWALK Fundraiser September 30 This fundraiser is to Support the Mission of Foundation Fighting Blindness (FFB) – to drive the research that will provide preventions, treatments and cures for blinding eye diseases. VISIONWALK is a 5K family friendly walk-a-thon style fundraiser. Tens of thousands of Twin Cities residents are losing their vision to retinitis pigmentosa (RP), macular degeneration, Usher syndrome and the entire spectrum of blinding retinal degenerative diseases. An estimated 500 individuals, families and friends touched by these diseases will join together. De-

tails: Sunday 9 a.m. registra- year’s event takes place in three tion at Lake Harriet band shell. areas across the state: Como Free. Park in St. Paul, Lake Winona in Winona and Canal Park in ‘Celebrating Diversity’ Duluth. Registration starts at Guest Speaker 9:00 a.m. and the Walk at 10:00 October 4 a.m. FFI: www.braininjurymn To celebrate October as “Dis- .org/events/walk.cfm or call ability Awareness Month,” 800-669-2742. ACCESS Student Organization and others are sponsoring Huntington’s Disease a talk by Matt Glowacki, enConference titled, “Diversity According to October 6th South Park and Family Guy.” The 2007 Minnesota ConferMatt Glowacki’s birth drew ence on Huntington’s Disease attention because even though will feature stories of HD, fohe was healthy, he was born cusing on how families live without legs. From the very with Huntington’s disease. beginning, his parents made Details: 8:30 a.m.—4:00 p.m., sure to provide him with every Calvary Lutheran Church, opportunity to participate in a 7520 Golden Valley Roadd, normal life. He currently runs Golden Valley, MN. $25 per three of his own businesses person for early registration, and has played sit-volleyball $30 at the door. FFI: Mary on the USA Paralympic Team. Barlow 612-237-7173. Details: Metropolitan State University, St Paul campus, 4th Annual Diabetes Expo October 13 700 E. Seventh St, Founders Hall, 3-5 p.m. FFI: 651-793- On Saturday, October 13, 2007, the American Diabetes 1525. Association-Minnesota will host its fourth annual Diabetes Artability Art Exhibit EXPO, a one-day event showOctober 4-6 casing the latest products and (See article on p.11) services for people with diabetes, at the Mpls Convention Sixth Annual Walk for Center. The Diabetes EXPO Thought provides the public with a October 6 The Brain Injury Association unique opportunity to talk with of Minnesota is sponsoring the health care experts and obtain sixth annual Walk for Thought. important medical and nutriFor six years the Association tion information. This highly has held the Walk to give a interactive event is a chance to voice to individuals and their find out how the American loved ones living with the ef- Diabetes Association is helpfects of brain injury. This fam- ing people with diabetes and ily-friendly event is open and their families in your commuaccessible to all. Details: this nity. 9 a.m. to 3 p.m. Free. ■

September 10, 2007

News At A Glance . . . Guidara Continues Fight for MS Rights

Volunteers Needed to Bridge Generations

disabilities are valued, contributing members of their communities.

On August 23, 2007, after waiting nearly two years to present his case before a social security administrative judge, Bob Guidara (featured in the May 2007 article “1,600 Down…8,400 To Go”) was awarded full retroactive SSDI benefits. The battle was bittersweet.

The CCP Foundation extends an invitation to risk takers and bold thinkers to apply for assistance. The Foundation provides modest grants (letter of interest deadline is September 15), technical assistance or stipends, and sponsorship of educational events, conferences or symposiums. Full guidelines can Guidara is among the 400,000 U.S. citizens who battle the be found online at www.ccpfoundation.org or by calling 651often-debilitating effects of multiple sclerosis. MS is an 356-1013. [Source: The CCP Foundation] autoimmune disorder with an unknown cause. Guidara recently New Documentary Highlights applied for the disability benefits every tax-paying citizen is Direct Support After Hurricanes supposed to be entitled. Through this experience with the cumbersome bureaucracy of our nation’s social security system, he initiated and continues to spearhead a grassroots Available from the Institute on Community Integration, the new documentary Higher Ground showcases the role of direct movement to change it. support professionals during and after Hurricanes Katrina and The current guidelines that direct case workers how to recog- Rita. nize the effects of MS haven’t been revised in decades. As a result, many individuals who should have been approved in a When Hurricane Katrina struck the city of New Orleans on timely manner have had to endure lengthy and costly appeals August 29, 2005, hundreds of people with developmental before they gain approval, if at all. disabilities were displaced. Roads were severely crowded or impassable. Cell phone didn’t work. Many people didn’t know Streamlining the process for disability benefits approval repre- where their family members were. And yet direct support sents only part of the problem, since permanent disability status professionals stayed with those they supported and made sure in its current form offers inadequate incentives for chronic everyone evacuated to higher ground. For months, these dediillness patients who are in remission to return to the work force cated women and men, working long hours for low pay, put and re-contribute to the ongoing solvency of the program. others before themselves, providing care and support with Guidara wrote a petition to Congress requesting that temporary improvised resources. For these heroes of New Orleans, being benefits be granted during times when they’re actually a direct support professional is much more than a job. needed. To date, over 4,000 people have signed the petition. Produced for Volunteers of America by the Research and The goal of the initiative is to prompt legislative changes to our Training Center on Community Living, at the University of nation’s social security and disability programs to address the Minnesota, Higher Ground sheds much-deserved light on this needs of U.S. citizens who suffer from the totally unpredictable example of action in the face of adversity. [Source: effects of multiple sclerosis and other serious chronic www.highergroundthemovie.org] illnesses. You can add your voice of support by logging onto http://www.acceleratedcure.org/petition. [Source: Bob Greeter Needed at Ramsey Government Center Guidara] The Ramsey County Community Human Services Department is seeking volunteers. Potential candidates will provide general CCP Foundation Funding Available assistance and information to visitors of the Ramsey County Government Center East. Volunteers must be at least 18 years The CCP Foundation believes that small initiatives working of age. If interested, contact Ramsey County Community outside of the system can make change happen for those with Human Services—Volunteer Services at 651-266-4090 or edevelopmental disabilities. The Foundation works to promote mail volunteerservices@co.ramsey.mn.us. [Source: Ramsey innovation and participation in community programs and ser- County Community Human Services Department] vices, increased opportunities for individuals, and increased public support to ensure that individuals with developmental

Adults age 55 years or older who enjoys working with kids are asked to sign up with Volunteers of America of Minnesota. Interested individuals are needed to help school age youth with their learning skills while building understanding between generations. Opportunities abound to share your life experience and talents in opportunities that include tutoring at schools, reading by telephone from home, mentor programs, environmental service activities and more. Transportation reimbursement and small stipends are possible for those who qualify. Call Connie at Volunteers of America of Minnesota, 612-617-7807 or e-mail at cerickson@voamn.org. [Source: Volunteers of America of Minnesota]

Funding Cuts May Imperil Blind Book Program The House Appropriations Subcommittee is cutting back funding for the Books for the Blind Program of the Library of Congress. Although this does not directly affect MN Radio Talking Book, it does possibly signal more cuts in the future, which could decrease funding for the valuable state service. Radio Talking Book is currently associated with the affected program NLS Books on Tape, bringing the cuts even closer to home. Another ongoing issue is a lack of funding for converting all tapes to digital format, which was originally scheduled for a 2008 unveiling but still needs major funding to become a reality. As is always the case, Congress has many difficult decisions to make when developing the federal budget. Programs that do not receive public support are easy to cut or even to eliminate. The Books for the Blind Program is an important service that does not deserve to face cuts during the conversion. If interested in expressing your opinions on this issue, contacting your members of Congress is proactive and straightforward. The Capitol switchboard can be reached at 202-224-3121 or 202225-3121. To find out who your Congressional representative is, visit www.house.gov. The Talking Book Program may be the most universally esteemed program that serves blind people. If you believe in this service, let Congress know just how important it is to you as an individual. [Source: www.nfbnet.org/pipermail/fabs/ 2007-April/000008.html] ■

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www.ccpfoundation.org or 651-356-1013

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September 10, 2007

‘Absolutely Heavenly’ Watsu Works Wonders in Warm Water by Molly Steinke and Nemer Fieger

lthough Watsu therapy has been around since 1980 and it is practiced in more than 40 countries, it is still a littleknown secret in Minnesota. But it won’t be for long if Mary LeSourd has her way. LeSourd, a certified Watsu practitioner and senior recreation aquatic therapist at Courage Center, was sold on Watsu

the first time she tried it a it,” says LeSourd, “they know decade ago. why we’re so passionate about Watsu.” Today, LeSourd and her coworker, Derek LaBerge, have Watsu is a gentle form of bodyseen a sharp increase in people work therapy performed in interested to try Watsu. Last warm water. It combines eleApril, Courage Center offered ments of massage, joint mobifree Watsu trials during World lization, muscle stretching and Watsu Week. Since then, the dance. The deeply relaxing efbuzz has been building. “Once fects of warm water and nurwe get people to experience turing support combine with Watsu practitioners Mary LeSourd and Derek LaBerge support client Julius Coffman with relaxation techniques. Watsu’s movements, stretches, massage and point work to create therapeutic benefits and potential healing on several levels.

Courage Center, a nonprofit rehabilitation and resource center, has always been a local leader in innovative therapies. Now, they are at the forefront The benefits of Watsu include: of a movement to spread the decreased pain and spinal pres- good word on this holistic, sure; improved sleep patterns whole body water therapy. and reduced anxiety; increased joint mobility and muscle re- Audrey Kintzi, Courage laxation; and renewed sense Center’s Director of Developof alertness and mind/body ment who has arthritis and fibromyalgia, wanted to try it connection. for herself. This complementary therapy is appropriate for people with “I came out of the session with traumatic brain injury, spinal tears pouring down my face,” cord injury, stroke, arthritis, says Kintzi. “For one hour, I fibromyalgia, cerebral palsy, forgot what it felt like to not have pain. It all melted away. Courage staff member Derek LaBerge works with client Jo Daugherty using Watsu methods. anxiety and chronic pain.

I AM

It was such an emotional release. That night, I slept like a baby for the first time in years.” Kintzi continues, “I have tried everything to deal with the pain. This was truly a blessing. I’m telling everyone about it. It is absolutely heavenly.” ■ New patients must undergo an evaluation before receiving treatment; however no doctor or therapist referral is necessary. For more info, please visit www.courage.org or call Mary LeSourd at 763-5200485.

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September 10, 2007

Age And Disabilities Conference Service Professionals Gather in Duluth for Annual Conference by Terri Ricci

ore than 800 professionals gathered in Duluth last month for the Age and Disabilities conference. The annual event, sponsored by the Department of Human Services (DHS) and the Minnesota Board on Aging, seeks to inform health and human service providers on the latest practices, programs and policies. This year’s conference, held at the Duluth Entertainment Convention Center, em-

phasized expanded community participation, expanded access to technology, and expanded independence for seniors and people with disabilities. Awards were also presented to service providers that showed exemplary leadership (see box). For information about the 2008 Age and Disabilities conference, contact David Brown at DHS, 651-431-2448. ■

Mary Hartnett (r) receives the Policy award from Jean Wood. Hartness is executive director of the Minnesota Commission Serving Deaf and Hard of Hearing People. Nicholas Truso (r) receives the Service Award from Alex Bartolic. Truso was an outreach student worker for the office of the Minnesota secretary of state.

Patty Dahl (left) and B.L. Tibbetts receive the Community Award, on behalf of the Grand Portage Reservation, from presenters Alex Bartolic (second from right) and Jean Wood (far right). Dahl directs the Grand Portage Elderly Nutrition Program, and Tibbetts represents Diane Sprague (center), director of the Lifetime Home Project, Minneapolis, receives the the Grand Portage tribal elders. Innovations Award from Jean Wood (l) and Alex Bartolic (r).

2007 Age and Disabilities Odyssey Awards Winners

IS YOUR PAY IN PREHISTORIC TIMES?

Policy Award (for public policy leadership, advocacy and education dedicated to improving the lives of people with disabilities): Minnesota Commission Serving Deaf and Hard of Hearing People, St. Paul.

Service Award (for exemplary practices, services and advocacy for seniors and their communities): Nicholas Truso, outreach student worker in the St. Paul office of the Minnesota secretary of state,.

Innovations Award (for innovations in direct service, coordination of services, community-based partnerships): The Lifetime Home Project, Minneapolis

Community Award (for implementing innovations to enhance the quality of life for seniors and their communities): Grand Portage Reservation, Grand Portage.

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September 10, 2007

A World of Darkness Versus A World Of Light

Commentary

Elementary Problems

by Dennis Stern

Socialization in School Sets Long Lasting Patterns of Exclusion

(To my sighted friend, Doc, 280 lbs, who loved “ball,” told tall tales and passed away in 2003.)

by Matt Kramer

Doc, you would have given your heart to beep ball, Baseball for the blind with beeping balls and buzzing bases. You and other fans love the underdog. Everyone here is an underdog–and a star! A Friday night social in Chicago before a tournament Featured pizza, wings, beer, soda Camaraderie and chin music. The games next day were filled with ups and downs, Exuberance, defeat, humor, sweat, love of teammates, Exhilaration of hitting boomers. Runners flew down the baselines, Fielders dove on green grass to block the balls. Simon and Wilbert, from the Cleveland Scrapers, Afro-Americans– Players aged 49, gave their teammates grief, And got kidded back for it. “Big G”–Gilbert, former pro athlete, 275 pounds– hit in the eyes by a bullet in a drive-by shooting– is kind and gracious. Chad, pitcher for the Comets, whose dad was blind, Called out, “Quiet on the Set”–beep ball likes noise–after the play is over! John, strong coach of the Comets, whose blond athletic son is blind. Big Grandfather John, who does the play by play on TV. Nick, another pitcher for the Comets, Hispanic, throws At chalked cardboard cutouts of the players In his basement over the winter. Young mother and fan, Betsy, with her 6-year old who has LCA. (A congenital loss of vision at birth) “I’ve come with my friend and her daughter who also has LCA. We want to learn the game so our kids can play With neighborhood children at home...We want to shake hands with All the Comet players. They are our heroes. We need two little T-shirts.” Mike, the gritty #2 batter for the Comets, has LCA– -he travels 30 minutes by train each week to practice. Kevin, the excellent pitcher for the Scrappers, has tunnel vision, Wears a catcher’s mask and shin guards to protect against fierce hitters. A lady gave fresh water to lapping dogs and wet towels to players. Three Lions Clubs worked so hard, and got everything donated– Tents, tables, benches, hot dogs, chips, pop, Complete chicken dinners for the honors banquet Saturday night. Doc–your heart would have gone out to The players in Chicago and St. Paul– Competitive and fun-loving. Just like at one of our softball tourneys years ago with Hot sun, action, stories, great plays and characters. This little light of mine–they’re gonna let it shine. Beepballers and their fans. ■

live with a disability. I use a wheelchair. Like many people with my disability, I have encountered numerous hardships as a result not so much of the disability, but the reaction of my peers to my chair. Although the societal barriers at the adult level are important, I will focus here on my experiences at the elementary school level.

Beepball

The author is coach of the St. Paul Lions beepball team.

First of all, just receiving standard transportation to school was a problem. My parents fought with the schools for my right to use transportation the other kids used. Without that advocacy, I very likely would have been required to take transportation that isolated me from the rest of my schoolmates. I also sat near the front of the bus, far away from most of the seats. This was not by choice, but by the location of the wheelchair straps, which held me in a position on the bus where I was unable to talk with my peers. I felt extremely isolated from the rest of the children on the bus, especially when I looked back and saw

them laughing while talking to each other. That being said, I learned to talk loud enough so my voice was heard. I talked to the bus driver, asking if there was another way I could position my chair to allow conversation with people that I could actually see. Social awkwardness has been one of the most frustrating problems I have encountered throughout my life. In school, I was frequently isolated from my classmates. I often pushed myself into groups because students almost never invited me. This exclusion led to understandable feelings of isolation and hurt. I often ended up asking the teacher if he/she would be my partner. One cannot underestimate, especially at that age, the effect that such shunning has on self-confidence. Imagine asking the teacher if he/she will be your partner simply because your classmates do not want to be your partner. Granted, this exclusion happened to unpopular kids as well. But even they had a distinct group that gen-

erally shut me out. Since I was actually quite outspoken as a child, I do not believe that my personality had much, if anything, to do with my isolation. Though I eventually developed some solid friendships, it took my own will. I had to break that fear and curiosity of the unknown. I write this not in an effort to blame people for problems I encountered. The school system improved significantly in its dealings with me. I write to identify a particular problem area in which I believe the root of discrimination and misunderstanding lies: elementary school experiences. The elementary school age is where we begin socializing with our peers, and school is the primary way in which we meet new people at that age, given our limited access to society. If we are to eliminate some of the social confines that society places on people with disabilities, we must strive to change society at this very basic level. ■

COPD A Major Cause Of Death, Disability by Jill Heins, M.S. and Cheryl Sasse, RRT

hronic obstructive pulmonary disease (COPD) is the fourth leading cause of death and the second leading cause of dis-

ability in the United States. More than 12 million people are diagnosed with COPD and an additional 12 million likely have the disease without knowing it. Chronic obstructive pulmonary disease is a serious lung disease that over time makes it hard to breathe. You may have heard COPD called other names, like chronic bronchitis and emphysema. In people who have COPD, the airways—tubes that carry air in and out of your lungs—are partly blocked, which makes it hard to get air in and out.

COPD is relatively new in the lung disease world. In 1903, more Minnesotans were dying from tuberculosis—one in ten—than from any other disease. At that time, the American Lung Association of Minnesota (ALAMN) sent mobile x-ray units around the state to screen for TB, as well as educate people about prevention. As tuberculosis waned and cigarette smoking came into vogue, ALAMN began to campaign against tobacco use. Long before the Surgeon General’s Report of 1964 declared smoking to be a cause COPD - cont. on p. 15

A Test for COPD 1. Do you cough several times most days? 2. Do you bring up phlegm or mucus most days? 3. Do you get out of breath more easily than others your age? 4. Are you older than 40? 5. Are you a current or former smoker? Many people have COPD and don’t know it. To find out if you could have COPD, consider this short interactive questionnaire developed by the Global Initiative for Chronic Obstructive Lung Disease. It has been scientifically evaluated and shown to identify people who are more likely to have COPD. If you answer “Yes” to three or more of the above questions, you should talk to your doctor about any trouble you have with your breathing. In addition, you can take steps to reduce your exposure to COPD risk factors, such as quitting smoking or encouraging your family members to do so.

September 10, 2007

‘Artability’ Thrives

Profile

Lucky Man

Thirteenth Annual Exhibit Celebrates Creativity of People with Mental Illness MS Does Not Affect Attitude, Says One-Time by Rachel Koep Geologist Ron Franke rt is all around you—

by Nancy Sopkowiak

from the design of the letters that make up this sentence to the pictures on the wall or the flowers outside your window. Art has a powerful presence in all our lives, and yet we often overlook it in the bustle of everyday life— and the human creativity that goes into making it possible.

on Franke is a happy man. Twenty-five years after getting MS, he still approaches each day with an eager sense of what’s possible.

Flashback to 1982, the week before Christmas: Ron Franke, People Incorporated’s Arta 20-something geologist, hurability art show gives you a riedly dressed for a family chance to be transported to function. All was well, until he another place—one where art couldn’t find his dress shoes. and creativity take center stage. Ignoring the frigid temperaIt’s also a chance to step out of tures, Franke rushed barefoot our usual whirl and celebrate out to his car to fetch his shoes. the talents of local artists— After he dashed back inside, artists for whom art is not only his feet felt cold, and the botGail Harbeck works on a piece for the 2007 Artability exhibit. an expression of themselves, toms were numb. Franke but also a lifeline in coping rose garden. It’s about friend- of her winning piece. She sells thought that the chilly sidewith mental illness. ship, too, symbolized in the paintings and greeting cards in walk had caused the numbness, but it never got better. cup raised high by two friends local galleries and shops. Stephanie’s Story sitting on a dock on a starry Stephanie Jones is making a summer night. As a person with bipolar de- After a month, Franke started name for herself in this city of pression, art plays a central seeing doctors about the foot artists; her latest achievement Jones is a self-taught artist who role in Jones’ life. “Art saves problem, but no one could figis in having one of her paint- likes a variety of media—from my life—I feel better and feel ure it out. Why would a healthy ings selected to advertise the painting and sculpture to productive when I do it, “ she young outdoorsman like 2007 Artability show. Her stained glass, puppetry, book- says. “I really rely on it when Franke be having such symppiece, “Minneapolis—City of binding and jewelry. Working my depression is bad, or if I’m toms? Franke began to worry; Lakes,” incorporates stylized with a mentor this year, how- manic it takes away my ner- what could it be? Finally, a St. representations of the ever, transformed her painting vous energy. I also feel less Paul neurologist diagnosed Spoonbridge and Cherry and she’s since completed alone, because I know I’m Franke with multiple sclerosis sculpture and the Minneapolis about 30 paintings in the style communicating something to in April 1983. Franke rememothers, even if I’m not there bers feeling totally relieved when they see it. I think it that he wasn’t dying. helps other people to know Franke compares his MS prothat they’re not alone, too.” gression to a glacier, slow but This year will be her second steady. “The next 13 years year exhibiting at Artability. were a struggle, but I lived a “I’m so impressed with how relatively normal life,” says many people come to the show, Franke. He started using a cane and how much art there is. I in 1986, then a walker in 1991. really like that you can see Walking got more difficult, so several pieces by the same art- Franke took his last step in ist. There are also so many 1995. He recalls initially feeldifferent styles—it’s fun and ing fear and loss; his mountain exciting to see it all because it climbing days were over. keeps my mind open to new ideas.” Jones is hoping to de- Franke remembers the 1990s velop her art further, perhaps as his most difficult time. He writing and illustrating experienced pneumonia, surgery, and hospitalization. “At children’s books. the same time, I was going through my divorce for three Gail’s Story Stephanie Jones with her piece titled “Minneapolis, City of years,” he recollects. Gail Harbeck is also an Lakes.” The painting was chosen as the publicity piece for Artability - cont. on p. 15 this year’s Artability show.

In 1995 Franke retired and began receiving SSDI payments. Unfortunately, he didn’t have any health insurance from 1995 to 1997. “I had to be creative with my healthcare,” recalls Franke with a smile. When he saw his neurologist, he would ask what samples she had in her drawer. She generally gave him whatever MS medications she had on hand. In 2000 Franke struggled with his skin breaking down, followed by a third degree wound the size of a fist. He spent another 55 weeks in the hospital and nursing home. Franke’s definition of a nursing home is “the prison with no bars.” Franke recalls one particularly dehumanizin experience in the nursing home: An aide came up to assist Franke. Rather than ask him what he needed, the aide questioned the staff member standing next to the hospital bed. Franke didn’t appreciate being treated as though he couldn’t think or communicate. He likes using humor to cope with his challenges, so he told the aide: “Feel free to ask me anything, my hearing is perfect.”

Franke just wanted to go home. “Luckily I hooked up with AXIS Healthcare,” he said. The health management organization arranged his bed repairs at home, and then helped him move back to his Hopkins condo. Today, Franke’s home is equipped with a variety of assistive technology. For instance, he uses a headset device to control his TV and telephone. Franke enjoys calling people on their birthday to sing his off key rendition of Happy Birthday. When he called his friend Karen Jensen, he made her day. “He’s one of my favorite people,” she says. Franke also receives personal care assistance. Due to his upbeat attitude, Franke’s PCAs love to work with him. Franke’s PCA Becky often stops by during her free time, because she enjoys spending time with Franke. Hanging out at home with family and friends is Franke’s favorite activity, because he is a “people person.” When asked how he is doing, he usually replies, “Wonderful.” Lucky Man - cont. on p. 14

Lucky man Ron Franke with his aide Becky.

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September 10, 2007

FAQ@DLL

Home Access Answers

IRWE: Work Incentive Of The Month by DLL Staff & Work Incentives Connection Iâ&#x20AC;&#x2122;ve heard people mention the some transportation expenses. term â&#x20AC;&#x153;IRWE.â&#x20AC;? What is that? To be approved by SSA, the expense must be: A: IRWE stands for Impair- â&#x20AC;˘related to a serious medical ment Related Work Expense, condition; which is one of the Social Se- â&#x20AC;˘needed in order to work; curity Administrationâ&#x20AC;&#x2122;s â&#x20AC;˘paid for out of your own (SSAâ&#x20AC;&#x2122;s) work incentives for pocket; people with disabilities. â&#x20AC;˘not reimbursable by any other source; and If you receive Social Security â&#x20AC;˘approved by the Social SecuDisability Insurance (SSDI) rity Administration (SSA). and have completed your Trial Work Period, you are usually Where can I get more inforineligible for a check if you mation? earn more than the Substantial Gainful Activity (SGA) level A: Contact the Minnesota ($900 per month in 2007). With Work Incentives Connection an approved IRWE, SSA at 651-632-5113 or toll-free doesnâ&#x20AC;&#x2122;t count earnings you use at 1-800-976-6728 (TTY: to pay for certain expenses, al- 651-632-5110 or MN Relay lowing your benefits to con- â&#x20AC;&#x201C; 711). The Work Incentives tinue, even though you are earn- Connection can clarify the efing more than the SGA level. fect work will have on your benefits, uncovering new If you receive Supplemental choices and opportunities for Security Income (SSI), your you to be more in charge of check is gradually reduced as your life. In addition to giving your earnings increase. The you detailed information about amount of an approved IRWE IRWE, the Connection can tell is deducted from the earnings you about other work incenSSA counts, giving you a tives that may apply to your higher SSI check than you situation. â&#x2013; would otherwise receive. If you have questions about What types of expenses community resources, call qualify as IRWE? DLL at 866-333-2466. DLL provides free, disability-reA: Examples of IRWE in- lated info. DLL does not enclude: adaptive equipment, dorse any particular web site vehicle modifications, per- or provider. They assume no sonal care attendant costs, ser- responsibility for transactions vice animal costs, out-of- between readers and listed orpocket medical expenses, and ganizations.

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Bathroom Modifications On A Limited Budget by Jane Hampton Dear Jane, We have spent the last few months working with a contractor designing our â&#x20AC;&#x153;dreamâ&#x20AC;? bathroom. We had big plans, but due to an unexpected financial situation, the amount of money we originally budgeted has been significantly reduced. Ultimately, we need to ensure the bathroom is safe for my husband, who uses a wheelchair. He needs a roll-in shower, handicap toilet and a roll-under sink. Can you take a look at our existing bathroom layout and make suggestions on how we could achieve an accessible bathroom on our very â&#x20AC;&#x153;limited budgetâ&#x20AC;?? Tammy, Lake City, MN

Dear Tammy, I am sure you are disappointed, both by the change in your financial circumstances and by being unable to achieve your â&#x20AC;&#x153;dreamâ&#x20AC;? bathroom at this time, but you still have options for improving accessibility with more cost-effective changes. We took a look at your existing bathroom layout and have a few simple suggestions.

Mount the new sink and countertop at a height that provides sufficient knee clearance for your husband, (typically 29â&#x20AC;? above the finished floor). Install a medicine cabinet in the side wall and/or corner shelving so items you use every day are within reach. We often use the Kohler Invitation sink because the 3â&#x20AC;? counter overhang brings the bowl closer to your body for grooming and hygiene. This sink also has the plumbing installed to the side and back walls, allowing for safe and easy access around plumbing, as well as maximizing the knee clearance depth below the sink. Ensure hot water supply and waste pipes are protected to avoid hot water burns.

First of all, remove the existing sink and vanity. Relocate the sink to the adjacent bedroom closet. This will free up floor space leading to the toilet and provide greater maneuvering space within the bathroom. Next, remove the bathtub and replace with a pre-fabricated, Unfortunately this will elimi- retrofit, accessible shower kit nate a closet in that spare bed- which is designed to replace room. Until such time a new an existing bathtub. These closet can be created, look at showers are designed to minialternate storage options such mize plumbing changes, as the as a dresser, armoire, surface shower drain is positioned to mounted shelf/rod, or wall coincide with the existing bathmounted hooks. tub drain.

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Select a shower that has full plywood backing allowing you to customize grab bar placement. If you do not select a unit with plywood backing, you will not be able to install grab bars securely. Some manufacturers offer models that already incorporate grab bars, which may or may not suit your husbandâ&#x20AC;&#x2122;s needs.

Widen the entrance door to the bathroom. If possible, consider hinging the door to swing â&#x20AC;&#x153;outâ&#x20AC;? of the bathroom or installing a pocket door that slides into the wall. If not, there is enough room for the door to swing into the bathroom, but it may be a little awkward at times.

Install a hand-held shower head at the existing shower connection. Choose a model that offers a minimum 60â&#x20AC;? hose. Provide two showerhead mounting locations, one at standard height for those standing while showering, the other mounted at a lower height to accommodate your husbandâ&#x20AC;&#x2122;s limited reach.

Finally, select a floor material that is water resistant, such as ceramic tile or marmoleum. Marmoleum is a linoleum product that is heat weld-able to create waterproof, hygienic seams. Marmoleum is stain resistant, indentation resistant and has natural anti-static properties which repel dust and dirt, making it easy to maintain.

Replace the toilet with a model that offers a seat height 17â&#x20AC;? to 19â&#x20AC;? above the floor. Review options to determine if your husband needs an elongated bowl and/or open-front seat.

Good luck on your project â&#x20AC;Śand remember, with a new coat of paint, new floor and fixtures, your bathroom will feel rejuvenated, even if it isnâ&#x20AC;&#x2122;t your dream. â&#x2013;

Add grab bars at locations needed adjacent to the toilet. Wall reinforcement is necessary for a safe installation. If you cannot afford to open the wall to install proper reinforcement, consider installing bars that mount directly to the toilet (toilet safety frame).

Do you have a question for Jane? Weâ&#x20AC;&#x2122;ll cover all of your questions in future issues of Home Access Answers. Please contact us at 952-925-0301, www.accessibilitydesign.com, or info@accessibilitydesign. com. Jane Hampton, CID, Access Specialist and president of Accessibility Design, founded the company in 1992 to enhance lives through design and project management. They provide design, consultation, project management, and product recommendation services specializing in home access for individuals with disabilities at all stages of life.

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September 10, 2007

Accessible Performances The following performances will be Audio Described (AD) for people who are blind or have low vision, or Interpreted in American Sign Language (ASL) for people who are deaf or hard of hearing. Selected performances offer reduced admission prices for the patron and one companion. When calling a box office, confirm the service (ASL or AD), date, time, ticket price and anything else needed, e.g. length of performance, etc. If you attend a show, please share your feedback with the performing organization, interpreter, and VSA arts of Minnesota. Accessible performance information is compiled by VSA arts of Minnesota, 612-332-3888 or www.vsaartsmn.org. Alexander and The Terrible, Horrible, No Good, Very Bad Day Aug. 21 - Oct. 28 Childrenâ&#x20AC;&#x2122;s Theatre Co., Mainstage, 2400 - 3rd Ave. S., Mpls. AD/ASL: Fri., Oct. 26, 7:30 p.m. Tix: Mention VSA Offer for $13 Tixs, Phone: 612-874-0400, www.child renstheatre.org Art Since 1950 Mpls. Institute of Arts, 2400 3rd Ave. S., Mpls. exhibit tour begins in Target Wing, 3rd flr atrium. ASL: Sun., Oct. 7, 1:00 p.m. Tix/Phone: 612-8703131, TTY: 612-870-3132, Email: dhegstrom@artsmia. org Web: www.artsmia.org

Bahala N (Let It Go) Sept. 14 - Oct. 7 Mu Performing Arts at Mixed Blood Theatre, 1501 S. 4th St., Mpls. AD: Sat., Sept. 29, 8:00 p.m. ASL: Sat., Oct. 6, 8:00 p.m. Tix: $20; $18 stu/Sr; $16 gps, Phone: 612-338-6131, www.muperformingarts.org or www.mixedblood.com Cherchez la Femme: Women in Art Sept. 9 Mpls. Institute of Arts, 2400 3rd Ave. S. Free ASL-interpreted public tour Sun., Sept. 9, 1:00 p.m. (no tour Sept. 2) begins by the Info Desk in the lobby. Phone: 612-870-3131, TTY: 612-870-3132, E-mail: dhegstrom@artsmia.org Web: www.artsmia.org

Randolph Ave., St. Paul. ASL: Fri., Sept. 28, 10:30 a.m. (school grps), Sun., Sept. 30, 2:00 p.m. Tix: school show $7; other performances $24; Grp/MPR/Sr $22; Stu/Child $15, E-mail: info@katha dance.org Phone: 651-6906700, School Show: 763-5330756, www.kathadance.org, www.theoshaughnessy.com The Dresser Sept. 7 - 30 Theatre in Round, 245 Cedar Ave., Mpls. AD: Sun., Sept. 30, 8:00 p.m. Tix: $20, Sr/stu disc, Phone: 612-333-3010, www.theatreintheround.org

Fashion 47 Sept. 25 - Oct. 21 Childrenâ&#x20AC;&#x2122;s Theatre Co., Cargill Average Family Stage, 2400 - 3rd Ave. S., Mpls. Sept. 4 - Oct. 6 Childrenâ&#x20AC;&#x2122;s Theatre Co., 2400 Dots and Feathers AD/ASL: Fri., Oct. 19, 8:00 p.m. - 3rd Ave. S., Mpls. AD and Sept. 28 - 30 Tix: Mention VSA Offer=$13 ASL: Fri., Sept. 28, 7:30 p.m. Katha Dance Theatre/Native Tixs, Phone: 612-874-0400, Tix: Mention VSA Offer for Pride Productions collaborate www.childrenstheatre.org $13 Tixs, Phone: 612-874- with intern'l touring artists at 0400, Web: www.childrens Oâ&#x20AC;&#x2122;Shaughnessy Auditorium, The Home Place theatre.org College of St. Catherine, 2400 Sept. 22 - Nov. 25 Guthrie Theater, 818 - 2nd St. S., September on the Radio Talking Book Mpls. AD: Sat., Oct. 13, 1:00 p.m., Fri., Oct. 19, 7:30 p.m. ASL: 6:00 a.m. News, Weather and Sportsâ&#x20AC;&#x201C; From the wire Fri., Oct. 26, 7:30 p.m., Thurs., services of the Associated Press Nov. 8, 7:30 p.m. Tix: Disc to 7:00 a.m. Morning Newspapersâ&#x20AC;&#x201C; Live broadcast of the $17; reg. $27-$57, Phone: 612Star Tribune and St. Paul Pioneer Press 377-2224, TTY: 612-377-6626, 8:55 a.m. Radio Talking Book schedule for the day www.guthrietheater.org 11:00 a.m. Bookwormâ&#x20AC;&#x201C; Novels and non-fiction books for daytime reading This month: The Time it Takes to Fall, Fiction by Margaret Lazarus Dean, 2007. Dolores grows up in the shadow of Cape Canaveral, her father works for NASA, and she dreams of becoming an astronaut. Then, on January 28, 1986, the Challenger explodes, and one of the seven astronauts killed is her idol, Judith Resnik. Read by Karen Wertz. 11 broadcasts. Begins September 18. 2:00 p.m. Potpourriâ&#x20AC;&#x201C; A wide variety of books, both fiction and nonfiction, for afternoon reading 4:00 p.m. Choice Readingâ&#x20AC;&#x201C; Critically acclaimed books on a wide variety of subjects. 5:00 p.m. Commentaryâ&#x20AC;&#x201C; The latest issues of national news magazines 6:00 p.m. Evening Newspapersâ&#x20AC;&#x201C; Live broadcast of the New York Times 7:55 p.m. Radio Talking Book schedule for the rest of the broadcast day 8:00 p.m. PM Reportâ&#x20AC;&#x201C; Books discussing critical, contemporary and controversial issues 9:00 p.m. Night Journeyâ&#x20AC;&#x201C; Books of intrigue and suspense 10:00 p.m. Off the Shelfâ&#x20AC;&#x201C; Mostly best sellers This month: Divisadero, Fiction by Michael Ondaatje, 2007 Teenaged girls Anna and Claire work with their father on his farm in northern California. Their farm hand Coop helps make up the makeshift family until a violent incident drives it apart. V, L, S â&#x20AC;&#x201C; Read by Del Adamson. Eight broadcasts. Begins September 26. 12:00 a.m. Good Night Owlâ&#x20AC;&#x201C; A wide-ranging assortment of books 1:00 a.m. After Midnightâ&#x20AC;&#x201C; Adventures of the heart and body *Abbreviations: V- Violence, L- Language, S- Sexuality

RTB Books Available Through Faribault All books broadcast on the Minnesota Radio Talking Book Network are available through the Minnesota Braille and Talking Book Library (MBTBL) in Faribault. Their phone number is 800-722-0550 and hours are 7:30 a.m. to 5:00 p.m. Monday through Friday. Their catalog is also online at www.klas.com/mnbph. If you live outside of Minnesota, you may obtain copies of books by contacting your own stateâ&#x20AC;&#x2122;s Network Library for the National Library Service.

Inside the Gate Sept. 17 U of M Diverse Voices Staged Reading, Rarig Ctrâ&#x20AC;&#x2122;s Stoll Thrust Theatre, 330 - 21st Ave. S., Mpls. ASL: Mon, Sept. 17, 7:30 p.m. Tix: free, Phone: 612-6242345, E-mail: utheatre@umn. edu Web: theatre.umn.edu Jane Eyre Sept. 8 - Nov. 10 Guthrie Theater, 818 - 2nd St. S., Mpls. ASL: Fri., Oct. 19, 7:30 p.m., Thurs., Nov. 1, 7:30 p.m. AD: Fri., Oct. 26, 7:30 p.m., Sat., Oct. 27, 1:00 p.m. Tix: Disc to $17; reg. $27$57, Phone: 612-377-2224, TTY: 612-377-6626, www. guthrietheater.org Jevetta Steeleâ&#x20AC;&#x2122;s â&#x20AC;&#x2DC;Two Queens One Castleâ&#x20AC;&#x2122; Sept. 21 - Oct. 7 Mixed Blood Theatre at Music Box Theatre, 1407 Nicollet Ave. S., Mpls. AD, ASL and Captioning: Fri., Oct. 5, 7:30 p.m. Tix: Disc by $5, Phone: 612-338-6131, E-mail: box office@mixedblood.com Web: www.mixedblood.com King Lear Oct. 5 - 14 The Royal Shakespeare Co., Guthrie Theater, 818 - 2nd St. S., Mpls. ASL/AD: Thurs., Oct. 11, 7:00 p.m. Tix: Disc to $17; reg. $27-$57, Phone: 612-377-2224, TTY: 612377-6626, www.guthrie theater.org/visit/the_building /access_services

Ladysmith Black Mambazo Sept. 29 Benedicta Arts Ctr Petters Auditorium, College of St Benedict, St. Joseph. ASL: Sat., Sept. 29, 7:30 p.m. Tix: $26; Sr/youth $23; CSB/SJU ID $13, Phone: 320-363-5700, www.csbsju.edu/finearts The Little Foxes Sept. 7 - 30 Starting Gate Productions at Mounds Theatre, 1029 Hudson Rd, St. Paul. AD/ASL: Sun., Sept. 23, 2:00 p.m. Tix: Disc to $10; Reg. $18; $16 stu/Sr, Phone: 651-645-3503, www.startinggate.org or www.moundstheatre.org A Masked Ball Sept. 22, 25, 27, 29 and 30 MN Opera Co. at Ordway Ctr for Performing Arts, 345 Washington St., St. Paul. AD: Sun., Sept. 30, 2:00 p.m.; 1:00 p.m.pre-opera discussion. Sung in Italian with English translations projected above the stage. Tix: Disc to Â½price for AD patrons, Phone: 612333-6669, TTY: 612-7296023, www.mnopera.org MN Renaissance Festival Aug. 18 - Sept. 30 Renaissance Festival, 3 miles S. of Shakopee off Hwy 169. ASL: Sat., Sept. 8, 9:00 a.m. 7:00 p.m. Interpreters at majority of performances during day, incl the parade at 2 p.m. Tix: Adult $18.95; Sr (60+) $16.95; Child (6-12) $9.95; $3 off in adv at SuperAmerica. Phone: 800-966-8215, E-mail: info@renaissancefest.com Web: www.renaissancefest.com

The Rocky Horror Show Sept. 16 - Nov. 25 Ordway Ctr for Performing Arts McKnight Theatre, 345 Washington, St. Paul. ASL: Wed., Oct. 10, 8:00 p.m. AD: Sat., Oct. 13, 8:00 p.m. Tix/ Phone: 651-224-4222, TTY: 651-282-3100, www.ordway. org/services/access.asp The Seagull Oct. 5 - 14 The Royal Shakespeare Company at the Guthrie Theater, 818 - 2nd St. S., Mpls. ASL and AD: Sat., Oct. 13, 7:00 p.m. Tix: Disc to $17; reg. $27-$57, Phone: 612-3772224, TTY: 612-377-6626, www.guthrietheater.org/

Trying Sept. 14 - Oct. 7 Park Square Theatre, 408 Saint Peter St. (20 W. 7th Place), St. Paul AD/ASL: Sat., Sept. 29, 7:30 p.m. Tix: Reduced to halfprice, Phone: 651-291-7005, www.parksquaretheatre.org VSA arts of MN Autumn Auction, Cabaret and 2007 Arts Access Awards Sept. 23 Sky Room, Macyâ&#x20AC;&#x2122;s 12th floor, 700 Nicollet Mall, Mpls. Entertainment by performer Stephanie Dawn. AD/ASL: Sun., Sept. 23, 2:00-5:00 p.m. Tix: $30, after Sept. 18 $35, Phone: 612-332-3888 v/tty, www.vsaartsmn.org

Smoke on the Mountain Homecoming Sept. 14 - Oct. 6 Rochester Repertory Theatre, 314 Â½ S. Broadway, Rochester. ASL: Thurs., Sept. 20, 8:00 p.m. Tix: $18, Phone: 507289-1737, E-mail: Box Office@RochesterRep.org Web: www.RochesterRep.org

The Wedding Singer Sept. 25 - 30 Historic Orpheum Theatre, 910 Hennepin Ave. S., Mpls. ASL: Sun., Sept. 30, 1:00 p.m. Tix: $22-72; AD offered if requested in advance, Phone: 612-373-5639 or 5609, Hotline: 612-373-5650, TTY: 612-373-5655, E-mail: Tix@ commonwealtheatre.org Speed-the-Plow Web: www.hennepintheatre Sept. 7 - Oct. 14 district.org/guestservices/ Jungle Theater, 2951 Lyndale aslad/ Ave. S., Mpls. AD: Thurs., Sept. 27, 7:30 p.m. Tix: ReWhistle Down the Wind duced to $8 (reg. $24-36) Oct. 9 - 21 Phone: 612-822-7063, Web: Ordway Center for the Perwww.jungletheater.com forming Arts Main Hall, 345 Washington, St. Paul. ASL: Strange Love Wed., Oct. 17, 8:00 p.m. AD: Sept. 21 - Oct. 14 Sat., Oct. 20, 8:00 p.m. Tix/ Skewed Visions at Casket Arts Phone: 651-224-4222, TTY: Bldg, 681 - 17th Ave. NE, Mpls. 651-282-3100, www.ordway. AD: Fri., Oct. 5, 8:00 p.m. Tix: org/services/access.asp $15, reg. $18, Phone: 612-2415727, www.skewedvisions.org

Nunsense: The Second Coming Sept. 7 - 23 Lyric Arts Co. at Main St Stage, 420 E. Main St., Anoka. ASL: Sat., Sept. 8, 7:30 p.m. Tix: $15, $13 stu/Sr, $17 box seats, Phone: 763-422-1838, www.lyricarts.org The Pillowman Sept. 20 - Oct. 14 Frank Theatre at Dowling Studio, Guthrie Theater, 818 2nd St. S., Mpls. ASL and AD: Fri., Oct. 12, 7:30 p.m. Tix: Reduced; reg. $18-34, Phone: 612-377-2224, TTY: 612-377-6626, www.frank theatre.org or www.guthrie theater.org/visit/the_build ing/access_services Redshirts Sept. 6 - 30 Penumbra Theatre Co., 270 N. Kent St., St. Paul. ASL: Sat., Sept. 15, 8:00 p.m. AD: Sun., Sept. 30, 2:00 p.m. Tix: Disc to $8-28 (Reg. $15; stu $35), Phone: 651-224-3180, E-mail: boxoffice@penum bratheatre.org Web: www. penumbratheatre.org

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UNFAIR -

FCC FILING -

Cont. from p. 1

“Even after setting my phone’s level of brightness to the highest level, I still have to use a closed circuit television to read the text displayed. This magnification device is quite large, encompassing a television set with a similar sized stand. This defeats the “mobile” aspect of my phone, since I have to wait until I am at home to enter contacts in the phonebook, change settings, etc.”—Richard Rueda, Union City, CA.

Newman, a past winner of the VSA arts of Minnesota Artist Recognition Grant, commented, “I hope my complaint brought a dose of reality to the Minnesota Daily and the campus. It was a victory for disabled people.” Sarah Bauer is Interim Director of the Minnesota News Council. The Minnesota News Council was created in 1970 to promote fair, vigorous and trusted journalism. It presents complaints about accuracy and fairness to news organizations, holds public hearings to consider unresolved complaints and conducts public forums aimed at fostering trust in journalism. The News Council has 24 voting members, half of them journalists, half laypersons. The hearing process is voluntary; the Council’s determinations are advisory and carry no sanctions. ■

Editor’s Note: We have re- News Council’s findings. cently learned that the Daily has no plans to publish the

LUCKY MAN -

Cont. from p. 11

Mari Newman shows her work “High Monkey Fashion” (crayon) at the 2007 Sister Kenny International Art Show.

CATASTROPHES -

In closing, here are Franke’s my legs and arms don’t work words to the wise: anymore, I wake up every morning with a smile. I have a Just like the ocean waves con- great deal to be thankful for. I tinually pound the shoreline am a happy man. I am a lucky into sand, so did the waves of man. Rather than reminisce MS pound away at my mobil- about times gone by or dwell ity. But just like the waves on my lost abilities, I choose could never catch the wind, to revel in my new life and all the waves of MS could not that I have. ■ catch my attitude. Even though

Although the symptoms for individuals with PTSD can vary considerably, they generally fall into three categories: • Re-experience: Individuals with PTSD often experience recurrent and intrusive recollections of and/or nightmares about the stressful event. Some may experience flashbacks, hallucinations, or other vivid feelings of the event happening again. Others experience great psychological or physi-

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Phones With Access Software Cost More “In order to access the features of the MotorolaQ, I had to make an additional out-ofpocket purchase of Mobile Speaks (a screen reader) to access the cell phone features. While this phone is more accessible than the Katana with my add-on software, it was quite expensive, and I would not have purchased it if my previous phone was accessible. Being Blind forced me to

612.781.0224

w w w. s i l ve r- l a k e - v i l l a g e . c o m

stretch my budget to the limits in order to have access to my cell phone’s features.”— Tony Claive, Winter Park, FL Customer Service Is Inadequate and Accessibility Features/ Information are Unavailable “I went to my local Sprint store, and explained that I was legally blind and looking for an accessible cell phone. The salesperson did let me know about getting my bill in large print format. Sprint’s representatives were unable to provide me with a description of the accessibility and compatibility features of their phones.”— Dennis Wyant, Melbourne, FL. ■

Cont. from p. 4

ological distress when certain things (objects, situations, etc.) remind them of the event. • Avoidance: Many with PTSD will persistently avoid things that remind them of the traumatic event. This can result in avoiding everything from thoughts, feelings, or conversations associated with the incident to activities, places, or people that cause them to recall the event. In others there may be a general lack of responsiveness signaled by an inability to recall aspects of the trauma, a decreased interest in formerly important activities, a feeling of detachment from others, a limited range of emotion, and/ or feelings of hopelessness about the future.

tional administrative tasks? Will gains in PCA wages be consumed by mandatory union dues? Unionization seems like an inefficient solution.

presentationimages@mn.rr.com

LIVE

phone’s instruction manual is in a pdf file, which I have difficulty accessing with my computer’s screen reading software because graphical representations are used to instruct a person on how to use the phone.”—George Roberts, Orlando, FL

• Increased arousal: Symptoms in this area may include difficulty falling or staying asleep, irritability or outbursts of anger, difficulty concentrating, becoming very alert or watchful, and/or jumpiness or being easily startled.

situations at http://mental health.samhsa.gov/publications/allpubs/CA-BK MARKR02/default.asp. The National Child Traumatic Stress Network Web site has information as well, including information specific to Minnesota at www.nctsn.org.

For those experiencing increased anxiety, NAMI Minnesota holds anxiety support groups. Times and locations are posted on our Web site, www.namimn.org.

For more information about the impact of disasters and how to cope, go to http://mental health.samhsa.gov/dis asterrelief/about.aspx. ■

Children can especially be affected, and may become fearful or experience anxiety. The federal government has helpful information available on their Web site that was produced for similar traumatic

Sue Abderholden is Executive Director of NAMI Minnesota. NAMI-MN’s mission is to champion justice, dignity, and respect for all Minnesotans affected by mental illness (brain disorders).

UNIONIZATION -

Ellen Houghton 952-404-9981

The Complete Lifestyle

Documentation Is Inaccessible “Upon receiving my phone, I was given an inaccessible print manual explaining how to use the phone. However, because I am totally Blind, I cannot read the text on the instruction manual. My

Cont. from p. 1

I fully understand and appreciate the frustration of PCAs, consumers, PCPOs, and community members because of low wages and poor working conditions often experienced by home health care workers. A 2006 study comparing average wages for PCAs providing services to Minnesota Medicaid consumers with wages in similar occupations discovered that between 50% and 80% of non-PCA occupations are paid higher than the maximum possible for Medicaid-

Cont. from p. 3

funded PCAs. June’s Supreme Court decision denying overtime for home health care workers reflects severe misunderstanding and lack of appreciation for industry workers. Since PCAs often lack basic benefits, such as medical, dental, vision, life and disability insurance, retirement, and paid travel between job sites, it is obvious why Minnesota Medicaid consumers and providers struggle to offer competitive jobs. Unfortunately, consumers and provider agencies are helpless to improve the situation; funding for PCA services is set by the Minnesota State Legislature and regulated by DHS. The state, in turn, receives much of

its funding for these services from the federal government. I think an efficient answer is NOT unionization, but rather a unified public awareness and advocacy campaign by consumers, families, PCAs, and provider agencies targeting elected state and federal officials plus mainstream media. I strongly encourage the Minnesota Consortium for Citizens with Disabilities, Minnesota Association of Centers for Independent Living, Direct Support Professional Association of Minnesota, Minnesota HomeCare Association, and their national counterparts to begin examining these issues and working toward alternative solutions to rebuild and maintain community-based support systems protecting consumer-direction as well as providing competitive and livable wages and benefits. However, if these stakeholders do not act, then I would support unionization for the advantages it may provide. ■

Rosedale

The author can be reached at lhhegland@precisainc.com.

September 10, 2007

ARTABILITY Artability veteran, having exhibited her drawings, paintings, and poetry there for the past five years—and she won first prize in creative writing in 2004. “I’ve always been a writer, but I jumped into the visual arts a few years ago,” she notes. “This summer I’ve been experimenting with acrylics—my focus has been the completion of several portraits, each painted using a different artistic style. I need to mix things up or I get bored!” Harbeck suffers from major depression, and her art helps keep her grounded and connected with the world. “Art helps me focus my mind—I have trouble with intrusive thoughts, so art helps me concentrate.” Harbeck has used People Incorporated’s Nancy Page Crisis Residence. “Everyone is so respectful and the staff are very helpful, and it’s nice to be amongst peers. It’s great to be able to avoid being admitted to the hospital, where it’s so impersonal and clinical. I find it hard to feel better in a place like that. It’s nice to know Nancy Page [Crisis Residence] is there if I need it.”

Classifieds

Cont. from p. 11 How you can support Artability and People Incorporated!

Solutions

Giving a gift to People Incorporated will help us serve the thousands of people all over the Twin Cities who live with severe and persistent mental illness. FFI: www.PeopleIncorporated. org, or contact Barbara Nichols, Resource Development Director, at 651-2883504 or Barbara.Nichols @PeopleIncorporated.org.

by Elias Luke LaVelle A self-critical mind. As strange as taking Scissors to Cut the sun from its sky But I often go here anyway Holding a scope to my eye I try to extract a blot, a fly Only to find that the object of my irritation, That Dark Spot. At the center Of My Perfect Globe Is

sculpting, drawing and painting since he was a kid, but art took on a special significance for him after he was diagnosed with paranoid schizophrenia.

“Art for me is very therapeutic—it’s a way to express my ideals, hopes, loves, and hates,” he notes. “It’s also a way for me to experience what it’s like to be healthy, by helping me focus my energy and attention.” LaVelle lives at People Incorporated’s Ruth House, a typical ranch-style home in East St. Paul that he shares with four other men. He’s also a member of People Incorporated’s APOLLO ReLike many other artists who source Center, and is serving got their start at Artability, as a volunteer on the Artability Harbeck’s work can be seen in Committee this year. other venues, too—she’s got pieces in the permanent col- Creative writing is also a siglections at Westminster Pres- nificant outlet for LaVelle’s byterian Church and at the creativity. “I love poetry—it’s Hennepin County Medical who I am. It’s closer to my Center. “I’d like to do a cohe- heart than sculpting even. I sive body of work so I could wish we could speak in poetic apply for some grants. I’d language all the time. I love eventually like to have a small the fact that poetry is language gift shop and art gallery.” She’s made beautiful.” LaVelle is looking forward to Artability. starting classes at Metro State “It’s great to see old friends University this summer, finthere and meet new ones, too. ishing up some general credits It’s a relaxed atmosphere, but before beginning coursework the art is great—everyone for a degree in theater. “I like should come see just how many how [theater] combines writtalented artists are here in the ing, visual arts, and music, and my goal is to have a positive Twin Cities.” influence on society through theater. I’ll still have time for Elias’ Story Elias Luke LaVelle is an Artability, though!” ■ Artability veteran, having won three major prizes in the past Rachel Koep is a Developtwo years—including first ment Associate and Executive prize in sculpture, first prize in Assistant for People Incorpopoetry, and the Alex Galle rated. Artability Award. He’s been

Artability at APOLLO October 4th - 6th People Incorporated, a nonprofit which promotes and secures independence for people with mental illness and other brain disorders, will hold its 13th annual Artability at APOLLO art exhibit on October 4th - 6th at Redeemer Arms - 313 Dale Street North in Saint Paul. The event features the works of over 100 local artists exhibiting 400+ pieces of visual art and literature. Details: October 4th from 6:00 to 8:30 p.m. (with an opening reception starting at 7:00), October 5th from 10:00 a.m. to 8:30 p.m. and October 6th from 12:00 to 5:00 p.m. Selected art pieces will be for sale, so arrive early for the best selection.

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The pupil. And I find That if I let the emptiness Be inside Without poking it And let the void open wide, I see. Where as Before Was Blind By Self-critical mind ■

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Oak Park Village: One-bedroom wheelchair-accessible apartments. Section 8 subsidized. Convenient St. Louis Park location. Call 952-9359125 for availability information. Equal Opportunity Housing.

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COPD -

Cont. from p. 10

of cancer, ALAMN was educating Minnesotans about the dangers of smoking and developing programs to help them quit. Smoking is the most common cause of COPD, accounting for as many as nine out of ten COPD-related deaths. The disease occurs most often in people age 40 and over who have a history of smoking (current or former smokers), but as many as one of six people with COPD never smoked. ALAMN is currently focused on a broad-based COPD education and outreach campaign. COPD also can also occur in people who have had longterm exposure to lung irritants such as certain chemicals, dust,

or fumes in the workplace. Heavy or long-term exposure to secondhand smoke or other air pollutants many also contribute to COPD. In some people, COPD is caused by a genetic condition known as alpha-1 antitrypsin, or AAT deficiency. It is estimated as many as 100,000 Americans have AAT deficiency. ■ For more information about COPD and ALAMN programming, visit www.alamn.org or call 651-227-8014. Jill Heins, M.S. is the director of respiratory health with the American Lung Association of Minnesota. Cheryl Sasse, RRT, directs professional education for the American Lung Association of Minnesota.

Courage Day Camp In Buffalo Being Perfect by Jean Jacobson

by Nancy Sopkowiak

ave you ever been to summer camp? I’ll bet you remember your favorite activities. Eleven-year-old Tyler Pinor recently attended the Courage Day Camp in Buffalo, MN. “My favorite day was swimming,” raved Tyler, smiling broadly. The Buffalo camp is one of many Courage regional day camps. They offer young people with physical disabilities, communication disorders or sensory impairments the chance to enjoy camping near their home. The camp director Jodi Hansen planned events for each day. Olivia McTaggart, 15, loved the Gooey, Silly and Messy Fun Day. The campers and staff sprayed each other with shaving cream, which wasn’t actually a planned event.

Being perfect trips were also included. One Definition: “complete in all respects, flawless” day the kids went to a nearby These words I got out of the dictionary bowling alley. Now if we were all perfect We would look similar to one another Sadly, the weather didn’t co- We would have the same noses, eyes, butts, thighs operate on Nature Day, so they No sense of humor ended up inside at Buffalo Zion You get my drift Lutheran Church. The kids For myself now, I wanted to be perfect created nature art works; Tyler I wanted to walk like other people made a nature collage with Have the thinking capacity like others dogs on it. “My family has a Have the outer beauty not the inner one 13-year-old black lab with ar- As hard as we try to be perfect thritis, and her name is Echo,” We can’t said Tyler with great enthusi- That is OK with me asm. We are unique in our own way I like being unique Kudos to the camp staff, who I don’t have to have other people’s noses, eyes, butts, thighs— kept the kids’ spirits upbeat. I can have my own. One patient staffer, Mike Kurth, will start college this fall; he plans to study Deaf Education. His dream job is teaching English.

The Buffalo Day Camp ran August 13 – 24, and included kids ages 6 to 15. If you would like more information about Courage camps, please go to Most events happened at the www.courage.org. ■ Buffalo Sturges Park, but field

September 10, 2007

Charlie Smith Community Awards Banquet V E E! A S AT D E TH Friday November 9, 2007 At the Como Lake Pavilion Black Bear Crossings

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