October 10, 2002
Directory of Organizations — Page 8
Inside ■ Work Incentives— p. 3 ■ Superman Walks— p. 4 ■ Fall At Interact— p. 10
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Volume 13, Number 10
October 10, 2002
TODAY’S GENETIC TESTING: A MODERN EUGENICS? by Rebekah Orr
or those who thought the practice of eugenics was ancient history, Ed Larson, J.D., Ph.D., is here to tell you that history may well be repeating itself. Larson, a Talmadge Professor of Law and Russell Professor of history at the University of
Georgia, addressed a large group of scientists, students, community members, and disability rights activists at the University of Minnesota on September 17. Larson’s talk was part of the Lunch Series on the Societal Implications of the Life Sciences
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cosponsored by the University’s Consortium on Law and Values in Health, Environment, and the Life Sciences and The Joint Degree Program in Law, Health, and the Life Sciences. Larson’s presentation described the modern practice of genetic testing in the context of the eugenics movement of the early 20th century, and its implications for society. Eugenics is the practice of eliminating heritable human disabilities through selective breeding. The movement began in England in the late 1800s under the direction of Francis Galton and was brought to the United States by scientist Charles Daven-
port and H.H. Goddard, a psychologist. Eugenics took on two forms: positive eugenics and negative eugenics. The former encouraged the procreation of individuals with desired heritable traits. The latter discouraged the procreation of disabled individuals, or those with undesirable heritable traits. Eugenicists targeted those people who had inheritable forms of retardation, mental illness, and physical deformity along with those who exhibited undesirable social behavior that was thought to be heritable, including crime, prostitution, and alcoholism. History The most notorious programs
stemming from the eugenics movement were the segregation and compulsory sterilization of those that society deemed unfit to reproduce. During the 1920s, all 48 states had laws that built and maintained institutions to segregate people with disabilities, and 32 states enacted compulsory sterilization laws. Ultimately, over 60,000 people in the United States were forcibly sterilized beneath these laws.
mote selective breeding are of greater importance to modern society.
Aside from the public policies that institutionalized eugenics, the movement also fostered a public education campaign aimed at coercing the public to voluntarily practice eugenics. These more subtle efforts to pro-
The film encouraged couples to be tested for disabilities before they married and began having children. Inspired by a Chicago physician who euthanized “defective” newborns, the film used Eugenics - cont. on p. 14
Eugenics was taught in high school biology classes, written about in popular magazines, promoted through traveling exhibits, and discussed in the movies. The most notable example of eugenics propaganda was a full-length feature film from the early 1900s entitled “Are You Fit to Marry?”
Tricomo’s Candidacy Statement munity. Here is his statement, reproduced as received:
We would like to acknowledge the GENEROUS donations of the Leadership Circle. Participants: Advocating Change Together Minnesota Governor’s Council on DD Remembering with Dignity University of Minnesota ICI Accommodating Care Inc. Metropolitan Center for Independent Living Handi Medical Supply Equity Services of St. Paul Vinland National Center Please consider joining The Leadership Circle Call Tim at 651-644-2133
My dear relatives,
n the September issue, we printed statements from the four Minnesota candidates for Senate. As that issue went to press, the Green Party replaced Ed McGaa with Ray Tricomo (after the primary). In the interest of fairness, we presented Candidate Tricomo with the same opportunity to speak to the disability com-
One of the great tradgeties, which will be our society’s undoing, provided we don’t surgically do away with, is the habit of labeling people. In doing so, they become stigmatized & limated. A society such as ours—which has always been in the fast lane—has fallen into the habit of marginalizing a whole range of people from the overweight to people in wheel chairs. As a result of spoken & unspoken bigotry, we cannot begin to calculate the damage, the loss of productivity, & the loss of
possibility for the evolution of all of us. There are those few who have been mislabeled “disabled” who have achieved monumentally, & we all know who we are. I am a student & advocate of indigenous teachings. One of the things I learned many years ago was that, in healthy tribal cultures, blind people are not only not babysat, but more is also required of them. For example, the best drum maker or tracker in the village may be a blind person. My relatives, I’m saying all of that to say this: it ought to be the goal of every disabled person in society to be an integral part of society. As a blind person, I am more than a little troubled by the
prospect of a kind of “dissability’s ghetto” or the use of such terms as “dissability’s culture.” Over 20 years ago, I broke with an acquaintance of mine over this very issue. As citizens of society, we must not trap ourselves in a one-issue lifetime. We must be renaissance women & men. Of course I support the ADA & other measures designed to make life possible for everyone with their respective disabilities. But let us look to the day when we won’t have to deal with labels or the discrimination those labels make possible. Yours in the struggle, Brother Ray Tricomo
October 10, 2002
will not affect and who will still need care. I am a proud member of the disability community and would consider myself a part of it under any circumstances—whether my spinal cord were repaired or not.
Tim Benjamin Editor
This month, John Tschida’s column offers another perspective on the topic of Christopher Reeve.
isability Awareness Month is a good time to discuss differing opinions. The article written by Mr. Janssen and Mr. Ryan on behalf of the Spinal Cord Society (SCS) about Christopher Reeve is their opinion on research. As many of you know there’s a split in opinions within the community on Cure vs. Care. This topic needs much more visibility and discussion in the community. Personally,
I’m not opposed to money being spent on research but we need to be cautious not to lose the progress and momentum we’ve made in care for the disabled. The SCS believes that with enough money spent on research, in the very near future there will be no need for care for the disabled with spinal cord injuries. If this is true, we have to remember there are many others in the disability community that this research
We also welcome thoughts on this issue.
*** Access Press wishes Martha Hage the best. Her radio show, Disabled and Proud, has kept us informed on so many people and issues over the years, that it’s hard to count. We look forward to seeing what Martha’s new endeavors will bring the
disability community. *** Thanks to Sue Wolf and Ann Hagen of the University of Minnesota Law School for recruiting Rebekah Orr, a student at the school, to write an article for AP on Ed Larson’s lecture. Larson, a Pulitzer Prize-winning author, lectured on eugenics and the effects of gene therapy in the disability community. Rebekah did a superb job and we appreciate her efforts. We hope that she will be willing to write again on medical and legal topics of concern to the disability community. *** Employment is always a big issue in the disability community. Derek VanderVeen offers us a look into the
world of retail and some of his informed decision on the experiences there. We thank Tricomo candidacy, you him for sharing his views. need to read his response on the front page. *** *** Ellen Houghton has been filling in as our spirituality Terry McAuliffe, Chairman columnist and offers a new of the Democratic National angle on the subject. If you Committee (DNC), recently haven’t read one of her announced a new website columns yet, now is the time (www.democrats.org/disto take a moment and see if ability) that is intended to you can relate to her insights. allow the DNC to speak Ellen, all your time and directly to the disability patience is very much appre- community on issues of ciated. concern. McAuliffe said: “We remain committed to *** ensuring that individuals with disabilities have the The Green Party candidate for facts on the issues that senator, Ed McGaa, was impact them... and this new defeated in the primary by website will provide those Ray Tricomo. Mr. Tricomo facts with a click of a was sent the same question mouse.” We should bookthat Access Press asked mark this new site for Coleman, McGaa, Moore, political insight into the and Wellstone. To make an Democratic Party. ■
Martha Hage Retires From Radio Show by Jeff Nygaard
ince going on the air in October of 1993 on Twin Cities community radio station KFAI, the show Disabled and Proud: It’s NOT an Oxymoron has brought listeners “insights into, ideas about, and discussions of disability culture.” That’s what Martha Hage says at the top of each show. Now, after nine years behind the microphone, the founder and host is stepping down. In an interview last month with Access Press, Hage confessed that the idea for the show came to her in a dream.
In the summer of 1993, after being laid off from her job, Hage says she dreamt about a radio station which “was devoted to disability issues and disability culture.” Of course, there was no such station, but she began to ask around the community to see if there was one that might be interested in having a program with a disability focus. Upon learning that part of the mission of KFAI Community Radio was to represent the unrepresented, Hage thought, “Who could be more unrepresented on the radio than
people with disabilities?” Soon, Disabled and Proud took to the air as a monthly feature on KFAI. After three shows, DAP went to a weekly format, and has been a fixture on the Twin Cities airwaves ever since. When I asked Hage what she, personally, had gotten out of her years as host of the region’s only radio program on disability culture, she laughed and said, “Exhaustion!” Then she got serious and spoke of how much she had learned. “I have met just such a wide variety of people
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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 ...................................................... Mary Kay Kennedy, Steve Kuntz, Lolly Lijewski, Bridget Smith, Joani Werner, and Linda Wolford Editor .............................................................................................................. Tim Benjamin Assistant Editor .......................................................................... Laurie Eckblad Anderson Cartoonist .......................................................................................................... Scott Adams Production ........................................................... Ellen Houghton at Presentation Images Access Press is a monthly tabloid newspaper published for persons with disabilities by Access Press, Ltd. Circulation is 11,000, distributed the 10th of each month through more than 200 locations statewide. Approximately 650 copies are mailed directly to political, business, institutional, and civic leaders. Subscriptions are available for $15/yr. Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. Paid advertising is available at rates ranging from $14 to $18/column inch, depending on size and frequency. Classified ads are $8.00, plus 35 cents/word over 20 words. Advertising and editorial deadlines are the last day of the month preceding publication. Access Press is available on disk. Call MN State Services for the Blind, 651-642-0500 or 800-652-9000. 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: firstname.lastname@example.org.
from all avenues of the disability community. And I personally have gained such an understanding of all disabilities.” She added, it has been wonderful to learn how many different things people with disabilities are doing in the community! Asked to recall highlights of the past nine years, Hage laughed and said, “Well, the one where my heart fluttered was when I interviewed John Hockenberry.” Interviewing a fellow journalist, and one internationally known, was “terrifying,” she admitted. Hage also told of her interview with the late Justin Dart and how amazing it was, “after the tape recorder went off, and we just started talking.” The opportunity to meet and talk to such people, she said, has been one of the greatest things about hosting the show.
Hage pointed out that it is still not uncommon, when talking about the show, to hear people say, “Disability culture? What in the world is that?” But she is clear that the idea of disability culture has been at the center of Disabled and Proud since the beginning. By interviewing people with a broad range of disabilities, who are engaged in a broad range of activities and occupations, Hage said the show has attempted to “get a sense of what disability culture is and also what it may become.” This, she says, is important for people both within the disability community and for people who don’t have disabilities. Hage’s last show will be October 29th, after which she will turn over the reins to her (“Excellent!”) producer and cohost, Sam Jasmine.
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Disabled and Proud: It’s NOT an Oxymoron can be heard every Tuesday night from 7:00 until 7:30 on KFAI Community Radio, 90.3 FM in Mpls, 106.7 FM in St. Paul. ■
Support KFAI Pledge Weeks at KFAI Radio in the Twin Cities run from October 14-29. The best way to say “Thank you” to Martha and “Good luck!” to Sam is to send in a pledge for Disabled and Proud. It is also a great way to thank KFAI for their support of the program. Martha stresses that it doesn’t need to be a large sum of money—five dollars would be great! The important thing is that you show your support for one of the very few radio shows in the United States devoted solely to exploring disability identity, culture, and pride. You can send your check, made out to “KFAI,” to: KFAI Radio 1808 Riverside Avenue Minneapolis, MN 55454 Make sure you write “Disabled And Proud Pledge” on the check. You can also pledge on-line at www.kfai.org. Click on “Pledge Now” and follow the instructions. ■
October 10, 2002
The MN Work Incentives Connection: Service, Outcomes, Challenges by Anita Boucher
n 1998, the disability community encouraged state officials to pursue a fiveyear grant from the Social Security Administration (SSA). This effort led to the creation of the Minnesota Work Incentives Connection, a statewide project serving all disability groups. As the Connection enters its fifth year, weâ€™d like to update the community on our progress and plans for the future.
tives or changes in work incentives. Intensive training is also offered on SSI, SSDI, and Medical Assistance rules, and the work incentives associated with each program. The Connection has conducted 37 training sessions in locations throughout Minnesota, with over 1,100 attendees. Training activities were cut back this year so staff could focus on direct services to individuals, but the Connection expects to resume The Minnesota Work Incen- sessions in early 2003. tives Connection helps people with disabilities determine In 2001 and 2002, the how work affects their Social Minnesota Work Incentives Security and other benefits. Connection conducted â€œSatisThe Connectionâ€™s core ser- faction Surveysâ€? to determine vice is Benefits Analysis, a how Minnesotans felt about customized, written plan the services offered. The showing the financial impact number of people who reof taking a job or working turned the surveys far exmore. Since January 2000, ceeded expectations. Over the Connection has com- 90% of those responding in pleted almost 350 Benefits both years indicated they Analysis plans. were either â€œsatisfiedâ€? or â€œvery satisfiedâ€? with the As part of a national Social Connection. A surprising Security Administration re- number of people took the search project, extensive data time to include written comis collected on Benefits Analy- ments with their survey resis participants to determine if sponses. These comments the services help them work have helped the Connection more and reduce their depen- fine-tune services to better dence on government ben- meet needs identified by the efits. Preliminary data show a community. 7.4 percent increase in employment, a 23 percent inWhat Does crease in hours worked, and a the Future Hold? 34.3 percent increase in earnings of participants from When the Minnesota Work intake through 6-month fol- Incentives Connection was low-up. This is significant, launched in 1999, it was given the U.S. General Ac- intended to be a long-term counting Officeâ€™s finding that resource for Minnesotans with less than 1% of SSA benefi- disabilities, rather than a ciaries leave the rolls each short-term project that would year as a result of paid disappear at the end of the employment. We applaud the grant period. The Connection many people whoâ€™ve over- is now faced with the chalcome very legitimate fears lenge of determining whether, about losing benefits, and and how, to sustain its have increased their level of services in the future. employment, despite the many obstacles in their way. The Connection also responds to a variety of inquiries via a statewide, toll free hot line. Since the spring of 1999, over 5,500 information & referral and problem-solving cases have been handled. In addition, the Connection has conducted over 400 outreach sessions with 5,000 people attending. Outreach sessions are held in locations across Minnesota to inform people about specific work incen-
The initial State Partnership Initiative grant received by the Connection is expected to end September 30, 2003. In 2001, the Connection received a second grant from the Social Security Administrationâ€”Benefits Planning, Assistance and Outreachâ€” but it funds only a small portion of the Connectionâ€™s activities. Any funding from state government is likely to be limited at best given the budget deficit. The resources of private funders are also stretched, making it difficult for them to assist, no matter how positive the Connectionâ€™s outcomes may be. Working with others, the Connection recently pursued a U.S. Department of Labor grant that would help sustain the Connection for several more years. We are grateful for the many organizations that wrote letters of support for this proposal. Only seven proposals will be funded across the country, so it remains to be seen if the Connection will be selected. While funding is pursued, the Connection is also exploring the feasibility of moving to nonprofit status. Despite the many challenges, we are optimistic that we will be able to sustain the services launched four years ago. We are encouraged by the many individuals and organizations that have expressed their support and their hope that we will continue. We welcome your input and ideas as we plan for the future. â– To reach the Minnesota Work Incentives Connection, call 651-632-5113 or 1-800-9766728, or TTY 651-632-5110 or Minnesota Relay - 711.
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Breakthrough: An Employment Opportunity by Laurie Ann Hobbs
inding qualified and capable employees is one of the largest challenges an organization faces today. Yet the U.S. Department of Labor estimates that nearly one out of two people with a disabilityâ€”with a college degreeâ€” is unemployed. Some creative companies have discovered that this large, untapped pool of educated individuals with disabilities can fill a variety of positions. To facilitate such connections between employers and workers, an innovative pilot program called Breakthrough is underway in Minnesota. It gives people with disabilities who are still in college the opportunity for meaningful corporate experience via internships. Spearheaded by The Disability Institute, the program is also different in that it is forging new partnerships between various organizations in the public and private sectors. Sponsoring partners of Breakthrough include the Minnesota Business Leadership Network (BLN), Minnesota State Colleges and Universities, Minnesota Job Skills Partnership, Disability Services at the University of Minnesota, Minnesota Association of Higher Education and Disability, and the Minnesota State Council on Disability.
Making a Difference Students who participated in this pilot year of the Breakthrough internship program agree that they obtained worthwhile corporate experiences that increased their value as competitive candidates for employment. The program participants worked in a wide range of areas including finance, engineering, human resources, and information technology. They had meaningful work and made positive contributions to the companies where they were employed.
tions, including password resets and problems related to email and Internet usage. According to his Northwest colleagues, Widerski is very conscientious, willing, and eager to learn and take on additional responsibilities.
â€œSteve Widerski is a great example of how Breakthrough works,â€? said Wendy S. Brower, executive director of The Disability Institute. The Breakthrough program takes the focus off disability, and puts the focus on obtaining valuable skills. This process has helped Steve grow professionally while helping NorthOne example is Steve west Airlines benefit from an Widerski, an ambitious St. outstanding contributor.â€? Paul Technical College student, who worked with North- Brower added, â€œWith his west Airlines in the companyâ€™s positive attitude, hard work, information services depart- and support from people and ment providing computer help programs in public schools desk support to employees and higher education, Steve around the world. During his proves that a person with a three-month internship, it is disability can make a major estimated that Widerski per- positive contribution in corsonally helped more than porate America.â€? 3,000 Northwest Airlines employees with computer ques- Breakthrough - cont. on p. 14
Companies participating in the early stage of this program include 3M, Northwest Airlines, Blue Cross & Blue Shield, and Deluxe Corporationâ€”all members of the Minnesota Business Leadership Network. Richard Anderson, Northwest Airlines CEO, leads the BLN in its efforts to promote competitive employment opportunities for individuals with disabilities through programs such as Breakthrough.
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October 10, 2002
The Extra Mile: Part One
by Mike Janssen and Rick Ryan
by Derek VanderVeen
nyone watching the September broadcast of ABCâ€™s documentary Christopher Reeveâ€”Courageous Steps was able to see â€œSupermanâ€? in one of his best roles yet. Seven years after suffering a spinal cord injury that left him with almost no function at all, he is experiencing what many persons with disabilities only dream of. Through an extensive and intensive (and no doubt, expensive) program of physical and electrical therapy, he has apparently regained a small amount of movement in his hands and legs along with claiming a fair amount of sensation throughout his body. It was incredible to see someone with such a severe injury get movement back after seven years. We not only saw him move his finger on command, but when he was in the swimming pool he was able to move his legs in spite of having five-pound weights attached. On top of that, when supported by a harness in the pool he was actually able to take a few small steps with minimal assistance. This return of function is
attributed to his therapeutic regimen, but Reeve himself is quick to point out that the source of a complete cure still lies in the biologic repair of the damage done to his spinal cord. This is evidenced by his continual push for government funding of embryonic stem cell and therapeutic cloning research. He has appeared before Congress numerous times to influence current legislation regarding stem cell research. We at the Spinal Cord Society (SCS) couldnâ€™t agree more with Reeveâ€™s actions on this last point. Two of our members were interviewed by Channel 5 news in conjunction with the Courageous Steps program. Unfortunately, the reporter failed to give us adequate credibility by not acknowledging our connection with SCS and the fact that we have been deeply involved in cure research for a long time. In the interview, we stressed the fact that while a therapy program may be a useful tool, it still doesnâ€™t address the root of the problem. At best it is just an adjunct to the real work of repairing the cord.
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Fixing the damage is where Christopher Reeve, and everyone else searching for a cure, should be putting all of their time and money. Therapy and other types of care may have beneficial effects, but we know that repairing the cord is the one thing that will bring about a cure. This will benefit millions with spinal cord injury as well as those with other central nervous system disorders. As Dr. Chuck Carson, founder of SCS, once said: â€œTo the uninformed, curing spinal cord injury looks like a big job, almost â€˜impossible.â€™ But so have many other things in the past: moon rockets, atomic power, andâ€”once upon a timeâ€”probably the wheel.â€? So take heart, because great strides are being made in this area. From studying stem cells and olfactory ensheathing cells to blocking growth inhibitors and building matrix bridges, we are steadily finding the tools we need to make cure a reality. What was once deemed impossible could now be just a few years away. We at SCS, with over 200 chapters around the world, know this because since 1978 we have been a driving force in the cure process. We have learned some valuable lessons, which most others have yet to realize. One is: donâ€™t expect cure to come from the government as they will never be able to single out spinal cord injury as a priority case. Another is: donâ€™t just put yourself in the hands of the researchers and hope they have the same integrity and sense of urgency that you do. Most importantly, if cure is your objective, then it must be your only objective. Thatâ€™s why our motto is: â€œCUREâ€” NOT CARE!â€? It emphasizes Superman - cont. on p. 15
t was April 2, 2001 when I started my job in a southern Minneapolis suburb. At no other time in my life can I remember being more nervous. Actually moving to Minneapolis from Michigan wasnâ€™t even as nerve-wracking. I knew what I was in for, making the transition from there to here. I was familiar with the culture of the area in which Iâ€™d planned to find an apartment, and was prepared for, even anticipated, the change. But my â€œnewâ€? job was different. Even though Iâ€™d come from another store in the same chain and had a good handle on store workings and the basic expectations of someone in my position, I knew the people Iâ€™d work with and the patrons of this new environment would be vastly different. Iâ€™m very much a people personâ€”I mean, I like people and people like me. But because of my disability, I tend to be shy at first, afraid of what people will think when they initially encounter me. My voice, especially, is a big insecurity as I suffer from an impairment called dysarthria. Itâ€™s probably the most prominent aspect of my disability, and certainly the one on which Iâ€™m judged the most. Strangely enough, it wasnâ€™t the customers I was most scared of; I knew theyâ€™d be as demanding as the ones I knew from my old storeâ€”itâ€™d be just a matter of breaking in the regulars. It was my coworkers. Iâ€™d hired on at my old store before it opened so the entire staff had pretty much started together and theyâ€™d seen and gotten to know my abilities along with everybody elseâ€™s. But what were these big-city folk going to think of some handicapped kid trying to fit in to their established workplace? I started with an extremely
heavy heart and a swarm of butterflies in my stomach, wondering if I had made the biggest mistake in my life. Would I succeed? Would I make friends like I had back in Michigan? Iâ€™d given myself twelve monthsâ€”one year to make it, with the safety net of moving back home. I really canâ€™t remember how Leslie and I met; the first day kind of blurs in my memory. I only know we met somehow. She cracked some smartassed remark and I retaliated with, of course, a more intelligent response that was equally witty, and weâ€™ve been completely inseparable ever since. And her best friend, Michele, welcomed me with equal warmth. My disability wasnâ€™t even noted in their eyes, or in the eyes of the other booksellers. They all saw immediately that I knew what I was doing, and that I did it well. For them, no further evidence of my competence was needed. It gave me the confidence and the backup to jump into this highly expectant community and show â€˜em what I was made of. The entire staff was warm, welcoming, caring, and proved to be a familyâ€”a support network that would hold me up in times when I needed it. It showed me that people are people wherever you go, and that I need not worry about how I appear to be. I just need to worry about how I am.
literally on my feet for the majority of an eight-hour shift. I walk a good four miles a day within the walls of that store. And books are heavy when youâ€™re dealing with stacks of them by the truckload. I carry piles of books up and down the escalator, sometimes with the aid of a cart, sometimes without. Sliding shelves of books down to fit one more title in, back and forth, over and over, is hard on the back and the arms. In many respects, I think of it as a huge jigsaw puzzleâ€”one for which I have no guide. Fitting pieces together in hopes that Iâ€™ll find a few that actually work; squeezing books onto shelves or displays that are already overstuffed. And thereâ€™s another puzzle: itâ€™s having to balance my responsibilities with my abilities. Sometimes my body just wonâ€™t do what I want it to, so I have to improvise ways to get my job done with methods that my body can relate to. Itâ€™s a challenge, and one that so far Iâ€™ve taken head-on, emerging victorious. My work has this dynamic quality of constantly presenting me with new challenges to overcome, causing me to evolve with the job and stretch my abilities, invariably finding out that I can do more than I thought. A lot of people think working in a split-level store would be a challenge for me with my limp. Itâ€™s not really. I actually do very well with stairs. Yes, we have escalators, but most of us walk up and down them to save time, so itâ€™s just like taking a stairway, albeit a bit shorter. And shorter means less time from top to bottom. Timing is a very crucial thing in my world.... â–
Physically speaking, the world of books isnâ€™t the simple job I thought I was going into out of college. When I first applied, I remember thinking: â€œWorking in a bookstore. What an amazingly easy job!â€? Itâ€™s actually very physical work. Even now I come home with legs that throb and feet that are so swollen that I can Part Two will be printed in barely get them out of my our November issue. shoes. To begin with, Iâ€™m
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October 10, 2002
The 2002 RBC Dain Rauscher Celebration of Courage Celebrates Advances in Employing People with Disabilities In its seventh year, Courage Center’s Celebration of Courage event honors the professional achievements of Minnesotans with disabilities. The gala awards ceremony, celebrated on Saturday, Oct. 12 at the Medtronic World Headquarters in Fridley, anticipates an audience of over 700 people.
National Courage Award Winner This year’s National Courage Award is presented to Twin Cities corporate executive, Vernon Heath. Heath, co-founder and former CEO of Rosemount, Inc., is well known for his business expertise and a lifetime of outstanding support to non-profit organizations. Heath contracted polio at age eight. An advocate for disability awareness and access, he served on the boards of Courage Center and Sister Kenny Institute and has been involved with Gillette Children’s Hospital and the MS Society. His personal experiences, business skills and talents contributed greatly to the lives of business leaders and people with disabilities. For more than 20 years, Courage has presented this award to people who have made a significant contribution to the health, welfare and rehabilitation of people with disabilities. Other national recipients include Stephen Hawking, Dr. I. King Jordan, former Senator Bob Dole, John Hockenberry and Itzhak Perlman.
Other awards which will be announced at the event include the Rose and Jay Phillips awards. Check www.courage.org for more information on these winners. Rose and Jay Phillips Award Winners Since 1964, Courage Center has presented its annual Phillips Awards to people with disabilities who have succeeded in their careers. In addition to career success, it recognizes community involvement and advocacy efforts. Through the years, the award has helped employers recognize the benefits of hiring people with disabilities. This year’s award winners are: • Jay Johnson • Damon Leivestad • Jeff Mickle • Jenny Peterson • Mark Siegel
Courage would like to thank the following sponsors: Event Sponsor RBC Dain Rauscher
Major Sponsors ABRA Auto Body and Glass Allianz Life Insurance Company of North America The Hubbard Broadcasting Foundation McGough Construction Merrill Corporation
National Courage Award Sponsor Medtronic, Inc.
October 10, 2002
Mental Illness/Brain Disorders
Why Don’t They Just Take The Ubiquitous Reeve Their Meds? by John Tschida
puff chair, carefully timing the beats of his respirator to all but eliminate pauses in his speech. His is a powerful presence and Reeve knows this best of all. In fact, he sells it: to Congress, to paying guests at fund-raisers, to the viewing public with every Barbara Walters interview, and to book buyers who view his pre-paralyzed physique and curly locks on the slipcovers of his books. And while some may view this as crass, I thank the guy for it. He is a constant reminder to all, not only of what could be, but of the challenges people with severe and visible disabilities face each day. Reeve isn’t banking on pity. Instead it’s a more complex and confrontational challenge that invites us into his world. This demands a comparison to his pre-accident self, which is a story of death, rebirth, and redefinition—death of movement, freedom, independence; and a re-creation of relationIt’s easy to criticize Chris ships, mission, and purpose. Reeve, and many do. In a nutshell: he’s got it easy up in All of these elements were Westchester County in a present in the recently broadcustomized accessible home cast ABC television special, with round-the-clock care Courageous Steps, directed that, according to Reuters, by Reeve’s 22-year-old son, clocks in at $420,100 each Matt. I marveled not at his year. His Hollywood buddies newly recovered, albeit limhelp him raise oodles of cash ited, movements and medical and lobby Congress to boost breakthroughs, but at the research dollars. His research fleeting moments of intimacy buddies and cutting edge and sadness. Without words, doctors are vying for Reeve’s the sight of him being lifted by attention to try a variety of three men from bed to new land and water-based wheelchair, and the discomtherapies. And many believe fort evident on his face as it he doesn’t do enough to help happened, was commonplace the Average Joe with a for him, but revealing to those disability just live better day unfamiliar with such basic needs. I was also struck by his to day. continued loss of hair, and his What Reeve is best at is need to comment on it (it’s marketing Christopher Reeve. caused by medication), and I can think of very few things the fact that he just plain as filled with irony and looked old (which drew no melodrama as a strapping comment or explanation). Hollywood superhero stilled in the prime of his life and Most powerful was the reacnow strapped to a sip-and- tion of Reeve when he failed
by Pete Feigal
am alive today, after 30+ years of serious mental illness, because of three things: effective medication; good cognitive therapy; and building new dreams, meaning, and purpose. I also know that the issue of medication noncompliance is one of the greatest problems that faces consumers and their loved ones. The choice of whether to take or not take meds is at the core of many broken hearts, lives, and families. On the surface, it seems to be a no-brainer: if you have a biochemical disease, take the pills to help with the symptoms. It seems simple, but it’s not. 20-28% of people quit taking their meds after one month. 40% quit after 3 months. And there are reasons why. There are issues and frustrations connected to medication that many family members and professionals perhaps aren’t aware of. Issues they need to know. In my own struggle with MI, there were many reasons why I didn’t take medications. Sometimes I couldn’t afford medications and doctor appointments. The disability hoops you have to jump through are so tough and shaming, that it makes it hard to receive financial help— and the illness itself makes it impossible to have a steady work history, with a steady salary and good insurance. There were times I was so depressed and discouraged, and had been that way for so long, that I didn’t believe I was sick. I thought that this was just the way I was, and taking medication seemed like a waste of time.
Through the years, the issue of side effects has been a crucial one. The drugs did help the 2 or 3% of the brain neurotransmitters that were effected by the illness, but were toxic to the other 97% of the brain that ran everything else. Fatigue, numbness, dry mouth, constipation, the “shakes,” drowsiness, loss of sexuality, loss of concentration, and loss of sense of self only begin to cover the gamut of side effects from psychiatric medicines. One of my friends was once on seven different meds at the same time: one for depression and the other six to counteract the side effects of the others. Reading about the side effects on a pill bottle isn’t the same as having to live with them, 24-7. Sometimes we who’ve had to take these medicines over the years, have wondered what’s worse: the illness or the cure? Even though the meds are becoming more and more refined, many of us are still hit with these residual problems— many of us have been burned so many times that it’s hard to try something else, to trust again. Trust is at the heart of another important factor: with the shortage of psychiatrists, it takes an average of six weeks to get an appointment. When you finally get to see a doctor, he spends an average of 6-8 minutes with you. Not much time for him to get to know you or your history. Not much time to decide which powerful brain-chemistry-altering medication he’s going to ask you to take. Not much time to develop a trusting relationship. One of the most effective ways to have people stay on their meds, is by having the time to build
trust—and for the doctor to give us options, let us have some decision on what goes into our bodies and brains. The world is facing a medical crisis because certain staff infections have become antibiotic resistant. This is because antibiotics have become so overprescribed and misused. If someone had a sore throat, they would take the pills 4 or 5 days, until they felt better, and then put the rest of the antibiotics back in the medicine cabinet. If a “normal, healthy” person cannot finish a week’s course of antibiotics, imagine how hard it must be for someone struggling with schizophrenia, OCD (obsessive-compulsive disorder), or bipolar disorder to take pills every day for the rest of his or her life. New delivery systems for the meds could substantially help this. For much of my struggle with MI, I didn’t want to be well. I was afraid that I would lose the most important piece of my creativity, of my “color,”of what made Pete, Pete. I was afraid that if I got “well,” I would become a “normal,” ordinary, boring person— unmotivated or unable to create. I was afraid that without my MI, I would shrivel up like a dry leaf, and the wind would blow me away. Sometimes I was so frustrated and angry at the medical system that seemed so helpless to help me, that seemed sometimes as if they were trying to make me sicker, that I refused to take the meds—a classic “cut off your nose to spite your face.” Feigal - cont. on p. 13
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hristopher Reeve’s fiftieth birthday has come and gone and the Man of Steel remains permanently seated. This is no surprise to me and I suspect it comes as no shock to him either. The date is remarkable only because shortly after he was thrown headfirst from his horse seven years ago, Reeve vowed that his potent mix of celebrity, political clout, and the effect of these factors on increased research funding would lift him from his wheelchair by September 25, 2002. I do not doubt his resolve. Nor do I question his motivation. Without question, Reeve is a ubiquitous and controversial figure in the world of disability politics. Say what you will about his quest for a cure, it’s his ubiquity that we all should admire. The guy is everywhere, and he’s got the media playing by his rules, which benefits the cause of people with disabilities everywhere.
his diaphragm test—designed to measure whether any of the necessary muscles, needed to free him of his ventilator and the 24-hour watch of a hired hand that accompanies it, were firing—it was gutwrenching. As much as Reeve wants to walk, it is the ventilator that is his albatross, and this brief, awkward interaction with his doctor made public his failure. Despite all the hype of Reeve’s unprecedented physical advances and his enduring strength of spirit, at the end of the day Reeve goes to bed tethered to an air hose that gives him life, and he hates it. Taken alone, this snippet of reality is the stuff of living with a disability at one point or another. Whether you’re fighting for the cure or fighting against it because having a disability is an integral part of who you are, there are those moments that creep up on you when limitation, failure, or lack of independence is just too much to bear. These moments are mostly hidden, tucked away and private. I did not envy Reeve’s sadness at this moment, but I do credit his son for sharing it with America. The marketing of Christopher Reeve will continue, and it will be equal parts inspiration and revelation. He will continue to be a lightning rod for a number of moral and political constituencies and evolve as an activist and advocate. I am thankful that as time has passed, Reeve has shared more of his challenges as well as his triumphs. His continued media presence— in print, on film and the small screen—gives us opportunities to both educate and debate our colleagues and friends, regardless of disability status, and defend our side of the philosophical divide as to whether he is friend, foe, or both. In my mind, such ubiquity ain’t a bad thing. ■
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October 10, 2002
Spirituality and Disability
It Ain’t Necessarily So by Ellen Houghton
ow strong are your convictions? How do others perceive the way you live those convictions? How often does truth turn out to be different than initial perceptions? I found myself wondering about these questions after seeing the video, A Cry In The Dark. It’s about an Australian couple who takes their family—including a newborn baby—on holiday to Ayers Rock, a national park in Australia. One night, while they were socializing around a campfire a few yards away, a dingo snuck into their unattended tent and stole their baby. The true story that unfolded received national news coverage. My first reaction to the mother’s reaction was to note how cold she seemed. Even later, while the father was falling apart, she appeared stoic. I, in fact, interpreted this to be “another dysfunctional person stuffing their feelings.” But it never fails— as soon as I judge someone, I’m shown the true value of judging others. Nothing! In actuality, she was a very spiritual person and was living her trust in her Higher Power. When I removed my judgmental glasses, I could see that she and her husband were really hurting from the loss of their daughter, but they leaned on their faith and continued forward. They pressed on to the point where they felt it essential to go public and warn others— hoping to prevent them from experiencing their kind of pain. Then you discover they belonged to a religious faith foreign to most of the people of the area—they were those strange people with the weird beliefs. Unfortunately, humans have a tendency to strike
Making Your House Accessible by Jeni Mundl
out at what we don’t understand. After all, it may force us to take a good hard look at our own opinions, fears, convictions, and so on— when it’s “easier” to go on the defensive and lash out, thereby diverting our attention away from ourselves and the need for our own internal work. This woman was actually convicted and served time, probably because her “coolness” made the jury think she had harmed the baby and blamed it on the dingo. But for the mother, her appearance of “coolness” was actually a demonstration of her conviction to her faith. Years later, when a prime piece of evidence surfaced and her case was retried, the inaccuracies of the first trial showed just how prejudiced the jury of “her peers” had been. How often in life have people been punished for what they believe? It’s sad that we can’t allow others to walk their own path of discovery. And sadder yet that we just don’t seem to learn from history. Two personal examples dealing with my strong spiritual belief come to mind. Years ago, I joined the Unity Church. I was raised as a Presbyterian and consider it a very positive, joyful part of my childhood. Another part of my Kansas childhood included regular Sunday drives with the family. Occasionally we would go to Unity Village where that religion began. I remember it as this weird place that had beautiful rose gardens (our reason for going), where we would eat in a cafeteria my father didn’t particularly like because they didn’t serve much meat (as in vegetarian). Generally, there was a mystery about this place—I had a feeling there was something that my family didn’t quite approve of, yet
we visited it to see its f you are a person with a wonderful gardens. Talk disability, the dream of about mixed messages! owning your own house is possible. There are many Now here I am, years later, adaptations that can increase changing from one of the most your independence and abilisupportive, positive aspects ties. Creativity is a must, of my childhood to one joined along with a good contractor to this place of childhood who will assist you in conmystery. This happened structing your perfect home. because I got more facts—I found out personally what Assessing Your Needs Unity was all about and it fit very well with my beliefs. Starting out can be difficult. Standard universal design The story doesn’t end here. concepts such as wider doors After I joined the church, my and ramps can be a beginning. next hurdle was telling my Beyond that, there are many mom. As expected, she was other resources available to not pleased. However, after a help you meet your personal year or so, we had a very accessibility needs. wonderful, intimate conversation about my switch to The Center for Universal Unity. This brings up my Design is a national research, second example. It started information, and technical with Mom finally sharing that assistance center. Their webshe was having difficulty with site is a great starting point: my reference to God as my www.design.ncsu.edu/cud. Higher Power. Now to me Print information may be God is a concept/faith/belief obtained by calling 1-800with lots of names. What 647-6777. name I use doesn’t change how I feel. But I’ve learned CASPAR is a comprehensive through life that people often assessment tool that assists have difficulty with personal with identifying problems definitions of particular words (doorways, lighting, appliand that the best way to be ances, and so on) in both preheard is to be cognizant of existing homes and new others’ feelings about those plans, and providing a sumwords, especially if it does not mary of recommendations. harm my own self-esteem. Their website can be found at Since this allows me to w w w . e h l s . c o m / c a s p a r / communicate better with caspar.html. The assessment people and reach a common tool is extensive and allows a ground, why not? It takes into person to think beyond simple account others’ feelings and adaptations to create an acmakes us partners—and isn’t cessible home. that what true communication is really about? Another good resource is found through the RESNA So here we were, back again Technical Assistance Project to perception. At a time in my at www.resna.org/taproject/ life when I felt more con- policy/community/HMRG. nected to God than I ever had, htm or by calling 703-524my mother was expressing 6686. This resource guide concern about my beliefs. provides information about This came as such a shock to assistive technology (AT) and me. After all, couldn’t she see home modifications. It covhow strong my faith was by ers definitions; laws and Houghton - cont. on p. 13 guidelines; initiatives from
the Assistive Technology Act grantees (such as the Fair Housing Act); advocacy, financing, modification, and research resources; accreditations; on-line courses; and a bibliography. The American Association of Retired People (AARP) also offers information on universal design and home modification at www.aarp.org/ universalhome/, including useful information for people with disabilities. Finally, IDEA Center, University of Buffalo (http:// ap.buffalo.edu/~idea) is a site dedicated to universal design. It contains links, useful resources, publications, general standards, and a free CD ROM of examples of modifications and new housing that is more accessible.
this pilot home project showcases some of the assistive technology features available to meet the needs of homeowners with disabilities. Hopefully, this unique partnership will continue to allow more people with disabilities to realize the dream of owning an affordable, accessible home that incorporates assistive technology such as aids for daily living, environmental controls, and mobility devices. Examples of such items include: a ceiling tracking system, specialized telephones, and proper placement of common items used in the kitchen and throughout the home.
Scott and Lisa’s home was just dedicated on Saturday, October 5. For more information, please take a look at the Twin Cities Habitat for Humanity’s website at www. Seeing the Possibilities tchabitat.org. Read the online journal of Scott and Lisa, Recently, Habitat for Human- which includes photos of the ity and Courage’s Assistive home. Technology Initiative partnered in building an acces- Also, in this year’s Parade of sible home. The house was Homes, Regel has a $649,560 built for Lisa Baron and Scott demonstration barrier-free Dehn, both of whom have home which features up-tocerebral palsy. The project date technology. The house incorporated assistive tech- contains a variety of high- and nology products and features low-tech accommodations. available for use by people For example, by speaking into with disabilities. The project a cell phone, you can tell is an excellent example of windows to open, blinds to community-wide collabora- close, lights to turn off and on, tion and partnership. Assistive and the television to change technology vendors, donors, channels. A push-button manufacturers, and volun- ceiling monorail-style sling teers teamed to achieve mea- lift carries a person from the surable outcomes (affordable bed to the oversized bathtub. housing with technology, When the doorbell rings, the learning accessible housing television switches to a view implementation and design) of the front door. When it for both consumers and par- rains, sensors automatically ticipants in creating an afford- close windows. able, accessible home. Funding By combining Habitat’s affordable housing program Funding for AT features in the with Courage Center’s exper- home is always an issue. In tise in assistive technology, Mundl - cont. on p. 13
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A Revolutionary Approach for People with Disabilitites
October 10, 2002
Directory of Organizations for Persons with Disabilities Editor’s Note: Please let us know if there are any errors in your listing or if you would prefer your organization be in a different category. Thank you! ADVOCACY ORGANIZATIONS ACT-UP MN, Robert Halfhill, 612-870-8026 Advocating Change Together, Kathy Sanders, 651-641-0297 ARC - Anoka/Ramsey Co.s, Marianne Reich, 763-783-4958 ARC - Hennepin/Carver County, 952-920-0855, archennepincarver.org ARC - MN, Bob Brick, 651-523-0823, 1-800-582-5256, firstname.lastname@example.org ARC - Suburban, Marianne Reich, 952-890-3057 ARRM, Bruce Nelson, 651-291-1086 Justice for All, 202-488-7684, Justin and Yoshiko Dart MN Consortium for Citizens With Disabilities, Tom Brick, 651-296-3478 MN Developmental Achievement Ctr Assoc, 651-647-9200 North Suburban Consumer Advocates for the Handicapped (NSCAH), Jesse Ellingworth, 763-783-4708, 763-7834724 TTY Ombudsman for Mental Health & Mental Retardation, 651296-3848, 1-800-657-3506, www.ombudmhmr.state.mn.us.
GOVERNMENT SERVICES continued MN Children with Special Health Needs, 651-215-8956, 1800-728-5420 V/TTY MN Dept. of Human Services, Traumatic Brain Injury Program, 651-582-1938 MN Gov. Council On Dev. Disabilities, Deborah Tompkins, 651-296-4018 V, 651-296-9962 TTY MN Library for the Blind and Physically Handicapped, 1-800722-0550, 507-333-4828, email@example.com MN State Council on Disability, 651-296-6785 MN State Services for the Blind, 651-642-0500, 800-6529000 St. Paul Advisory Commitee for People w/Disabilities, Roger Schwagmeyer, 651-266-8891 Social Security, St. Paul PASS Cadre, 651-290-0304
HEALTH ORGANIZATIONS AXIS, Diana MacLennan, 651-556-0865, www.axishealth.com Children’s United Hospital, 651-220-8000 Gillette Children’s Hospital, Lynn Carpentier, 651-229-3845 Health Psychology Clinic, U of M, 612-624-9646 BRAIN INJURY SERVICES A Chance to Grow, Bob DeBour, 612-521-2266, newvisions Methodist Hosp. Ctr. for Senior Services, 952-993-5041 Methodist Hosp. Parkinson Center, 952-993-5495 @mail.actg.org Brain Injury Assoc. of MN, Stephanie Weiss Lake, 612-378- Methodist Hosp. Stroke Supp. Grp., 952-993-6789 Shriner’s Hospitals for Children, Karen Boyer 612-596-6105 2742, 800-669-6442, firstname.lastname@example.org Sister Kenny Rehabilitation Institute, Access and Referral Traumatic Brain Injury-TBI Metro Services, 612-869-3995 Department, 612-863-4457, www.sisterkennyinstitute.com COMMUNITY-LIVING SERVICES Community Bridge Consortium, Pat Svendsen, 651-748-7437 HEARING IMPAIRMENT SERVICES V/TTY, email@example.com Deaf Blind Services MN, Jean Greener, 612-362-8454 V/ Community Involvement Programs, 612-362-4400 TTY, firstname.lastname@example.org Help Yourself, Sara Meyer, 651-646-3662 Henn. Co. Lib. Homebound Serv., Becky Mobarry, 952-847- Deaf & Hard of Hearing Services Metro, Marie Koehler, 651297-1313 TTY,651-297-1316 8850 Metro Ctr. for Independent Living, 651-646-8342 V, 651- MN Assoc. of Deaf Citizens, Inc., Douglas Bahl, 763-7575998 TTY 603-2001 TTY SE MN Ctr for Independent Living (SEMCIL), 507-285-1815, MN Commission Serving Deaf & Hard of Hearing People, 651-297-7305 TTY 507-285-0616 TTY SILC-Statewide Independent Living Council, Bill Bauer, 651- MN Relay Service, 1-800-627-3529, sprint.trscustserv@mail. sprint.com 296-5085 V, 651-297-2705 TTY So. MN Independent Living Enterprises & Serv. (SMILES), Self Help for Hard of Hearing (SHHH), Leslie Cotter, 651772-4931 V/TTY Alan Augustin, 507-345-7139 West Henn. Commu. Services, Mary Perkins, 952-988-4177 Sight & Hearing Association, 651-645-2546 EDUCATION ORGANIZATIONS Adaptive Recreation & Learning Exchange, Kristen Abel, 612-861-9361 V/TTY, email@example.com Adult Basic Ed/Special Needs, Betty Sims, 651-290-4729 Center for Learning & Adaptive Student Serv. (CLASS), Robert Doljanac, 612-330-1648, firstname.lastname@example.org Fraser Community Services, Diane Cross, 612-861-1688, email@example.com Learning Disabilities Program (Family Services of St. Paul), Jan Parkman, 651-767-8321 Learning Exchange, Lynn Dennis, 952-885-8531, TTY 952885-8590 MELD (MN Early Learning Design), 612-332-7563 V/TTY, firstname.lastname@example.org Mpls. Community and Technical College, Office for Students w/ Disabilities, Melissa Newman, 612-341-7000 V/TTY MN Higher Education Services Office, Sarah Beth Mueller, 651-6420533 PACER Center, Inc., Pat Bill, 952-838-9000 V/TTY, tbill @pacer.org Parent Support Network (EBD/ADD/ADHD/LD), 763-7834949 POHI District Consultants-Mpls. Public Schools, Jim Thomas- Anwatin Coord., 612-668-2450 Project Compass, Adult Disability Program - Winona Comm. Educ., Helen Newell, 507-454-9450 Voice/TTY, email@example.com Reuben Lindh Learning Center, 612-721-5111 GOVERNMENT SERVICES Dakota Co. Social Services, 952-891-7400, www.co.dakota .mn.us Division for Persons w/Developmental Disabilities, 651-2822086 Mpls. Advisory Commitee for People with Disabilities, Margot Imdieke Cross, 651-296-6785, elizabeth.held @ci.minneapolis.mn.us
LEGAL SERVICES Legal Advocacy for Persons with Dev. Disabilities, 612-3321441, mnlegalservices.org Legal Aid Society of Mpls, Laurie Moser, 612-332-1441 MN Disability Law Ctr., 612-332-1441 MENTAL HEALTH SERVICES Alliance for Mentally Ill - Wash. Co., Bob Rafferty, 651-4393800 Alliance for Mentally Ill of MN, 651-645-2948 Centre for Mental Health Solutions, Tamera, 952-922-6916, www.tcfmhs.org Henn. Co. Mental Health Ctr., Joel Pribnow, 612-348-4947 Mental Health Association, 612-331-6840, 1-800-862-1799, www.MentalHealthMN.org Mental Health Consumer/Survivor Network, 651-637-2800, 1-800-383-2007, firstname.lastname@example.org Mental Health Law Project, Pat Siebert, 612-332-1441 MN Assoc. for Child. Mental Health, 651-644-7333, 1-800528-4511, email@example.com MN Depressive & Manic Depressive Assoc., 612-379-7933 Pilot City Mental Health Center, Sy Gross, 612-348-4622 Tasks Unlimited, Natalie Trockman, 612-871-3320, www.tasksunlimited.org RECREATIONAL SERVICES Access Outdoors/Wilderness Inquiry, Mike Passo, 612-6769416, 800-728-0719 V/TTY, www.accessoutdoors.org or www.wildernessinquiry.org Achilles Track Club-Uptown, Kay Christianson, 612-8227872 Boy Scouting for People w/ Spec. Needs, Jan Bovee, 651-2241891 Camp for Child. & Teens w/ Epilepsy, Deborah McNally, 651646-8675, 1-800-779-0777 Camp Winnebago, Kathy Geely, 507-724-2351, campwinn @means.net
RECREATIONAL SERVICES continued Capable Partners, Jonathan Leslie, 763-542-8156 Friendship Ventures (Camp Friendship, Eden Wood Center, Ventures Travel Service), 952-852-0101, www.friendship ventures.org, firstname.lastname@example.org Ski for Light, 612-827-3232 US Electric Wheelchair Hockey Association, Craig McClellan, 763-535-4736 REHABILITATION CENTERS Courage Center, 763-588-0811, www.courage.org. Functional Industries, Don Tribyl, 763-682-4336 Lifetrack Resouces, 651-227-8471, TTY 651-227-8471 Metro Work Center, Inc., 612-729-7381, mwc@onvoy mail.com Midwest Special Services, Lyth Hartz, 651-778-1000 North Memorial Rehabilitation Services, North Memorial Medical Center, 763-520-5690 Opportunity Partners, 952-938-5511, 952-930-4293 TTY Owobopte, Inc., 651-686-0405 Rehabilitation Centers, MRCI - Burnsville, 952-894-4680 MRCI - Carver/Scott 952-445-6811 MRCI - Chaska, 952-448-2234 MRCI - Fairmont, 507-238-4388 MRCI - Industrial Operations, 507-386-5600, email@example.com MRCI - Lakeville, 952-898-5025 MRCI - New Ulm, 507-233-2700 RESIDENTIAL SERVICES Accessible Space, Inc., Stephen Vanderschaaf, 651-6457271, www.accessiblespace.org Altern. for People with Autism, Inc, Mike Amon, 763-5605330, firstname.lastname@example.org Anoka Metro Reg. Treatment Ctr., Judith Krohn, 763-7124000 Homeward Bound, Inc., 763-566-7860 Nat’l Handicap Housing Inst., Inc., Mike Bjerkesett, 651-6399799, email@example.com The Phoenix Residence, Darlene M. Scott, 651-227-7655 RESOURCE CENTERS Access for All, Mike Chevrette, 651-481-4062 ALS Assoc. (Lou Gehrig’s Disease), 612-672-0484 Alzheimer’s Association, John Kemp, 952-830-0512 Am. Behcet’s Disease Assoc., 1-800-723-4238 Am. Cancer Soc.- MN Div., 612-925-2772, 1-800-227-2345 Am. Cancer Soc. (Ramsey Co.), 651-644-1224 American Diabetes Assoc., Lee Johnson, 763-593-5333 American Heart Assoc., Betty Young, 952-835-3300, www. americanheart.org American Lung Assoc., 651-227-8014, 1-800-642-5864 (in MN), firstname.lastname@example.org American Syringomyelia Alliance Project Inc. (ASAP), 1800-ASAP-282, www.asap4sm.org Apollo Resource Center, Leah, 651-227-6321 Arthritis Foundation, Deb Dressely, 651-644-4108 Catholic Charities, Program for People with Disabilities, John Schatzlein, 651-222-3001 Chemical Injury Resource Assn., 651-647-0944 Chronic Fatigue Syndrome Association of MN, 651-644-4975 Cystic Fibrosis Foundation, Molly Boyum, 651-631-3290, email@example.com Disability Institute, Wendy Brower, 952-935-9343 Down Syndrome Assn. Of MN, 651-603-0720, firstname.lastname@example.org Duluth Consumer & Family Regional Resource Center, 218728-3531 East Suburban Resources, Sue Schmidt, 651-351-0190 or MRS 800-627-3529 ELCA Committee on Disabilities, Linda Larson, 612-7888064 Epilepsy Found., John Thompson, 651-646-8675, 800-7790777, email@example.com Hemophilia Foundation of MN, 763-323-7406 Independence Crossroads, Rob Olson, 612-854-8004, firstname.lastname@example.org Indian Family Service, Maggie Spears, 612-348-5788 KDWB Variety Family Center, Elizabeth Latts, 612-6263087 www.allaboutkids.umn.edu Directory - cont. on p. 9
October 10, 2002
DIRECTORY- Cont. from p. 8 RESOURCE CENTERS continued League of Women Voters, 651-224-5445, email@example.com Leukemia Society of America, MN Chapter, 952-545-3309 Lupus Foundation of America, MN Chapter, 612-375-1131, firstname.lastname@example.org Lyme Disease Coalition, Linn Olivier, 651-64-7239, email@example.com Lyme Disease Network of MN, Linn Olivier, 651-644-7239 MN AIDS Proj., MAP AIDSLine 800-248-2437 or 888-8202437 V/TTY, www.mnaidsproject.org MN Stroke Association, 800-647-4123, www.strokemn.org Muscular Dystrophy Assoc., Health Care Service Dept, 952832-5517 (Mpls. district), 952-832-5716 (St. Paul district) National Ataxia Foundation, Donna Gruetzmacher, 763-5530020, firstname.lastname@example.org Nat’l. Multiple Sclerosis Society, MN Chapter, Jill Retzer, 612-335-7900, 1-800-582-5296 V/TTY, jretzer@mssociety. com People, Inc. Epilepsy Services, Anne Barnwell, 612-3389035, www.orgsites.com/mn/epilepsy Spina Bifida Assoc. of MN, Lisa Schaffee, 651-222-6395 Stroke Center, N. Memorial Medical Center, 763-520-5900 Twin Cities Autism Society, 651-647-1083 United Cerebral Palsy of MN, JoAnn Erbes, 651-646-7588, 1800-328-4827, ext.1437, email@example.com
SUPPORT continued VISION IMPAIRMENT SERVICES continued Spinal Cord Injuries Help Line, Roger Hoffman, 651-464- Volunteer Braille Services & Large Print, 763-971-5231 7559 VISUAL/PERFORMING ARTS TECHNOLOGY Interact Center for the Visual and Performing Arts, 612-339Closing the Gap, MaryAnn Harty, 1-507-248-3294, 5145 V, 612-339-6465 TTY, firstname.lastname@example.org email@example.com VSA MN, 612-332-3888 V/TTY, firstname.lastname@example.org TRANSPORTATION Metro Mobility, 651-602-1111, 651-221-0014 TTY U of M AFFILIATED PROGRAMS Institute on Community Integration, Vicki Gaylord, pub email@example.com, 612-624-4512 U of M Disability Services, 612-626-1333 V/TTY, web firstname.lastname@example.org U of M Disabled Stud Cultural Ctr, 612-624-2602, 612-6267003 TTY
VOCATIONAL SERVICES AccessAbility, Inc., Darren Mack, 612-331-5958, email@example.com Access to Employment, Lori Sterner, 763-543-6980V/TTY Employment Action Center, 612-752-8800, www.eacmn.org Goodwill Industries/Easter Seal, Lynette Bergstrom, 651-6462591 V, goodwilleasterseals.org Hennepin County Vocational Services Program, Shanna Melton, 612-348-8370, firstname.lastname@example.org. mn.us Kaposia, Inc., Jon Alexander, 651-224-6974, jalexander @kaposia.com Lifeworks Services, Susan Sczcukowski, 651-365-3732, email@example.com Midway Training Services, Barbara Kale, 651-641-0709 Minnesota AgrAbility Project/Rural Rehab Technology, Beth Zabel, 507-354-5380, firstname.lastname@example.org MN Resource Center, Kim Feller, 612-752-8102, kfeller@ resource-mn.org MN Work Incentives Connection, 651-632-5113 or 1-800976-6728 (voice), 651-632-5110 (TTY) Rehab Services Branch, 651-296-5616 or 800-328-9095, 651296-3900 TTY Rise, Inc., 763-786-8334, email@example.com TSE, Inc., Phil Saari, 651-489-2595 Vinland Center, Carol Jackson, 763-479-3555 V/TTY, vinland @vinlandcenter.org
VISION IMPAIRMENT SERVICES Am. Council of Blind Services, James Olsen, 612-332-3242 BLIND, Inc., Joyce Scanlan, 612-872-0100 Candle in the Window, Kathy Szinnyey, 1-502-895-0866 Deaf Blind Services MN, Jean Greener, 612-362-8454 V/ TTY, firstname.lastname@example.org Sight & Hearing Association, 651-645-2546 SERVICE DOGS State Services for the Blind: Hearing and Service Dogs of MN, Alan Peters, 612-729-5986 Aids & Devices (The STORE), Duane Troff, 651-642-0777 V, 612-729-5914 TTY, email@example.com Audiotape Transcription Services, Ellie Sevdy, 651-642Helping Paws Of MN, 952-988-9359, firstname.lastname@example.org 0849 Braille Transcription Services, Mary Archer, 651-642-0852 SOCIAL SERVICES Employment Services, Joe Pattison, 651-642-0515 Capella Management Group, Gerald Glomb, 651-641-0041 Radio Talking Book and Dial-In News, Stuart Holland, 651NW Henn Human Services Council, 763-493-2802 V/TTY 642-0503 Self-Sufficiency Services, Linda Lingen, 651-642-0504 SUPPORT United Blind of MN, Inc., 763-391-3699 Brain Injury Support Group, North Memorial Medical Center, Vision Loss Resources, 612-871-2222 Susan Keeney, 763-520-5090 If your organization would like to be included in the Emotions Anonymous, 651-647-9712, email@example.com Directory of Organizations, contact Access Press at Gay and Lesbian Helpline, 612-822-8661 V/TTY Spinal Cord Support Group, North Memorial Medical Center, Suite 104S, 1821 University Ave. W. St. Paul, MN 55104 • 651-644-2133 • Twyla Misselhorn, 763-520-1449
October 10, 2002
Interact’s Fall Season T
he Interact Center for the Visual and Performing Arts is the premier visual and performing arts center for artists with disabilities in the country. The exceptional quality of the artwork in the Inside Out Gallery and critically acclaimed work of Interact Theater have roused national and international attention. This year the Interact Theater Company performed at the KickstArt Festival in Vancouver and toured Scandinavia to rave reviews. National Public Radio broadcast a segment on the tour and calls have come in from around the country wanting to know more about the “Interact Model,” an ongoing program where artists with a wide range of disabilities come together to “create art and challenge society’s view of disabilities.” The season promises to be one of the most exciting yet for Interact. The Inside Out Gallery will open with “Red Clay/Black Dirt; A North & South Collaboration.” This will highlight the work pro-
duced in the visual arts studio with visiting self-taught/visionary artists from Georgia—Alicia Caban Wheeler, John Moon, Harold Rittenberry Jr.—and Interact’s artists. This project brings two disparate cultures together to be inspired by one another. In addition, artists with disabilities can begin forming new alliances with artists from rural, isolated, and marginalized populations to strengthen bonds with an
confront a society that has become one of charlatans, greedy CEOs, and warmongers led by a dim-witted leader called Shrub. This comic allegory incorporates original music and arresting visual images, with a cast of 30 actors with and without disabilities. Opening night is Thursday, October 24 at 7:30. Shows run through Saturday, November 9. There is a matinee at 3:00 p.m. on Saturday, October 26 and another at 1:00 p.m. on Wednesday, November 6. Artist appreciation night is Monday, October 28 at 7:30. ASL performances are on Saturday, November 2 at 3:00 p.m. and 7:30 p.m.
Also this fall: Inside Out Gallery hosts its enlarged perception of com- Annual Holiday Sale of Outmunity. This event runs from sider/Visionary art opening October 18 through Novem- November 30, 2002. ber 22, with an opening reception on Friday, October For more information about 18 from 5-9 p.m. group sales, visit our website at www.interactcenter.com or Interact Theater opens with call 612-339-5145 about ASL “Cloud Cuckooland,” a biting and audio description. ■ political satire inspired by Aristophanes’ The Birds. A Information provided by chorus of birds, representing Jeanne Calvit, Artistic Directhe disabled, have come to tor of Interact. “Cloud Cuckooland”
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.
Hapgood; runs 9/13-11/3; AD Thurs., 10/24, 7:30; Jungle Theater; Mpls.; 612-822-7063; www.jungle theater.com. An ingenious spy thriller in a Cold War world of double and triple agents, where everyone is suspect and nothing is as it seems.
ASL Fri., 11/15, 7:30; atre Co.; Mpls.; 612-874Bloomington Civic Theatre; 0400; www.childrenstheatre. 612-825-7667; www.bloom org. ingtoncivictheatre.com. Merton of the Movies; runs Two Queens; runs 10/23– 11/22-12/22; AD Sun., 12/22, 11/24; AD Fri., 11/15, 8:00; 2:00; Theatre in the Round Mixed Blood Theatre; Mpls.; Players; Mpls.; 612-333-3010; 612-338-6131; www.mixed www.theatreintheround.org. blood.com. A young innocent from the Midwest arrives in HollyRiding the Rails; runs 10/18- The Producers; runs 11/12- wood with big dreams. 11/3; ASL Sun., 10/27, 2:00; 12/7; AD/ASL Sun., 11/24, AD Tues., 10/29, 11:00; 1:00; Historic Orpheum The- Between the Worlds—Songs SteppingStone Theatre; St. atre; Mpls.; 612-373-5650 or of Dark and Light; runs Paul; 651-225-9265; www. 612-989-5151; www.state- 12/17-12/22; ASL/AD Sun., steppingstonetheatre.org. orpheum.com. 12/22, 2:00; In the Heart of Hop a train with three young the Beast Puppet & Mask hoboes living in the Great University Dance Theatre; Theatre; Mpls.; 612-721Depression. ASL Sat., 12/7, 8:00; Univer- 2535; www.hobt.org. A sity of Minnesota Theatre, winter solstice celebration of A Year with Frog and Toad; Rarig Center; Mpls.; 612- music from around the world, runs 8/20-11/2; AD/ASL 624-2345. sung by a chorus of 40 women Wed., 10/30, 10:30 a.m. & joined by singers, dancers, Fri., 11/1, 7:30; Children’s The Boys Next Door; runs musicians, and puppets. Theatre Co.; Mpls.; 612- 12/4–12/29; AD Fri., 12/13, 874-0400; www.childrens 8:00; Mixed Blood Theatre; The 1940’s Radio Hour; theatre.org. This world pre- Mpls.; 612-338-6131; www. runs 11/22-12/22; ASL Sun., miere follows two best mixedblood.com. 12/22, 2:00; Commonweal friends—Toad, a worrywart, Theatre; Lanesboro; 507-467and Frog, who’s not—and Radio City Christmas 2525, 800-657-7025; www. their chum, Snail. Spectactular; runs 12/13- commonwealtheatre.org. ■ 1/5; AD/ASL Sun., 12/15, Vampires, Revenge of the 2:00; Historic Orpheum The- For updates by phone, call Mariachi; runs 10/24-11/2; atre; Mpls.; 612-373-5650 or VSA arts of Minnesota at ASL Fri., 11/1, 7:30; Roseville 612-989-5151; www.state- 612-332-3888 or statewide Area Middle School Theatre; orpheum.com. The world 800-801-3883 (voice/TTY). Little Canada; 651-415-2146; famous Rockettes appear for www.rosetownplayhousephone. the first time in the Twin The tale of the civatateo, Cities with eye-high kicks; Mexican witches, who en- precision dancing; and dazcounter identical twins, bicy- zling lighting, scenery, and reater accessibility to clists, vampire hunters, tur- costumes. the arts and city prokeys, scientists, and a Mariachi grams will be recognized on band. The Wizard of Oz; runs Wed., Oct. 16 at the new 11/19-1/11; AD/ASL Wed., Crown Theatres in downtown Jekyll & Hyde; runs 10/31- 12/18, 10:30 a.m. & Fri., Minneapolis. At 4:00, a 11/24; AD Sun., 11/10, 2:00; 12/20, 7:30; Children’s Theprogram cosponsored by VSA arts of MN and the Mpls. Mayor’s Advisory Committee on People with Disabili“A musical that matters deeply.” ties will present awards to — NY Times individuals and organizations for their achievements.
Wings director Peter Rothstein music director Denise Prosek starring Janis Hardy
October 4 ~ 26 The Loring Playhouse
(612) 343-3390 or ticketworks.com
The new movie complex’s technology—enabling patrons who are deaf, hard-of-hearing, blind, or have low vision, to enjoy the movies—will also be introduced. It is the first theatre in Mpls. with this technology. (In September, the AMC Theatres at Eden Prairie Ctr. began offering captioned movies on a limited basis, and audio description capability will be arriving there shortly as well.) VSA arts of MN, which promotes access to the arts for and by people with disabilities, will present its 6th annual Arts Access Awards (also called the “Jaehny,” honoring Jaehn Clare, cofounder of VSA arts of MN) to: Yuri Arajs, Mpls. artist; Lisa Goodman, former Mpls. City Council member; Dennis Lamberson, Brainerd theatre director; Morgan Grayce Willow, Mpls. poet and teacher; Awards - cont. on p. 14
October 10, 2002
IN BRIEF . . . . Invacare Wheelchair Recall
ADA Small Business Workshop
In the September 1, 2002 fires that have injured and xml/story.ssf/html_standard. On November 8, several Policy Division, Office of sonable accommodation. issue of the Cleveland Plain Dealer, reporter Becky Gaylord detailed the legal problems faced by Invacare Corp., a maker of batteryoperated wheelchairs. Apparently, a flaw in the batterycharging system has caused
even killed chair users. A xsl?/base/business/1030 little-publicized recall of the 872676100890.xml. Readers defective chairs began in may also contact Gaylord via April of 2000. e-mail (bgaylord@plaind. com) or by phone at 216-999For the complete story, visit: 5029. ■ http://cleveland.com/business/plaindealer/index.ssf?/
Legal Council at the EEOC, will be the workshop presenter. She is currently speaking to small employers nationwide about the ADA and the employment of people with disabilities.
Questions will be answered and networking opportunities will be available. All attendees will receive the EEOC’s Americans with Disabilities Act: A Primer for Small Business.
Some of the issues addressed To obtain a registration form will be: who is protected by or further information, please the ADA, employer’s respon- contact Cindy Tarshish at sibilities, hiring guidelines, ADA MN, 651-603-2015, difficult for people with Washington, DC 20508, 202- Joyce Walker Jones, Senior obtaining medical informa- TTY-651-603-2001. ■ disabilities to obtain or repair 326-3104, 202-326-2071 Attorney-Advisor in the ADA tion, confidentiality, and realift-equipped vans. The (fax), firstname.lastname@example.org. merger is before the Federal Trade Commission. Time is of the essence! Please let the FTC know the impact Concerned parties should con- this will have on the options On September 1, 2002 Re- (RTC) cemeteries. Those please call Rick Cardenas tact: Eric E. Elmore, Staff people with disabilities will membering with Dignity who lived and died in RTCs (ACT) or Jim Fassett-Carman Attorney, Federal Trade Com- have in the purchase of van (RWD) and Advocating and were buried anonymously (RWD) at 651-641-0297. You mission, 601 New Jersey equipment. ■ Change Together (ACT) were will now have graves marked may also visit the website at: Ave., N.W., Suite 6108 A, awarded a contract by the by name, date of birth, and www.selfadvocacy.com or email Rick at ricardenas@ State of Minnesota for the date of death. aol.com and Jim at placement of named grave markers at Minnesota Re- For more information on email@example.com. ■ gional Treatment Center cemetery renovation plans, the Earle Brown Center at the issue reports on mental illness University of Minnesota’s St. and suicide prevention. Paul campus. For more information, contact ❖❖❖❖ Dr. Satcher greatly raised NAMI-MN at 651-645-2948 public awareness in 2000 or SAVE at 952-946-7998, Please patronize your Access Press Advertisers — when he became the first U.S. ext. 19. ■ and tell them where you heard about them. Surgeon General in history to
Merger Action Alert Braun Lift Co. is in the process of trying to purchase Ricon. If this occurs, it means there will be only one manufacturer of lift equipment for people with disabilities in the U.S. It also means that Braun would control the number & who the dealers of the equipment would be, thus making it potentially more
Minnesota business and disability organizations are collaborating to sponsor a halfday workshop targeting businesses in Minnesota with 100 or fewer employees. This workshop will address Title I of the ADA, which concentrates on employment-related issues for people with disabilities.
Grant For Grave Markers
SAVE/NAMI-MN Fall Conference Former U.S. Surgeon General, David Satcher, will be the keynote speaker at the SAVE (Suicide Awareness Voices of Education)/NAMIMN (Nationally Alliance for the Mentally Ill) fall conference set for November 16 at
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October 10, 2002
October 10, 2002
FEIGAL - MUNDL - Cont. from p. 7
by Shannon Robins and Lolly Lijewski o, this is not a bad joke, but what you will hear when candidates come to your door asking you to vote for them. And voting is no joke.
radio, attend public policy forums in your district, and form an educated opinion about the individuals who are running for elected office.
The election in November will be a critical one for Minnesota. Although this is said of every election, with the budget deficit facing Minnesotans and with the downturn in the economy, this is truer than ever. Services for people with disabilities are likely to face serious and devastating cuts come January 2003.
As candidates appear at public events, or at our doors canvassing for votes, asking a few well thought-out questions may help in the decision making process. Here are a couple of examples:
1. How do you propose to solve the budget deficit, and what do you perceive the impact will be on services for persons with What can you do to help disabilities? prevent this? Action steps everyone can take are: read 2. What steps will you take to about the candidates in the ensure a more diverse newspapers, watch or listen to workforce, inclusive of debates on television and people with disabilities, in
HOUGHTON - Cont. from p. 7
Minnesota? What actions will you take to facilitate maintenance of employment status and encourage vocational growth for persons with disabilities? Beyond these questions, be prepared—think of the issues of importance to you and have your own questions ready. Also, there are several ways to register to vote: you can contact the Secretary of State’s office or your county auditor (listed in the government section of the phone book), or you can register when you go to vote with your picture identification and proof of current address (for example, your electric bill). Remember to make a difference and get out and vote on Nov. 5! ■
Cont. from p. 6 Why I didn’t just take my meds is because if I did, I was admitting to myself and the world that I was mentally ill. Even now, in 2002, the mystery and dread that still comes with these diseases makes abandonment, social disrepute, and financial difficulties— to the point of losing your job—all possible. With the stigma from society and your own “inner tyrants,” your self-image can take a terrible beating, one that many never recover from. You feel like your life is over, that you have no credibility, no gifts, nothing to offer. I believe medications are lifesavers that are becoming more effective by the day, and I have seen thousands of people benefit from them. But our doctors, friends, and family need to know that taking them isn’t such a nobrainer. The more they know, the smarter, kinder, and better allies they will be. ■
observing my actions? Ah, What do you think, is there publisher of Access Press— you mean not everyone inter- someone or some concept owns Presentation Images, a prets my actions the way I do? you’re judging on faulty facts company assisting others in or limited knowledge? How the selection, development, The joy is that we were able to about someone you’re wait- and implementation of the talk it through (thanks to Mom ing for to initiate a conversa- proper media needed to bringing it up) and that we are, tion? What do we have to lose convey their messages. AddiI think, closer now than ever. by letting others be them- tionally, she was the pubTo me that’s the key—we selves or by asking them to lisher/editor of “Stepping need to talk about things. We share their thoughts? Better Up,” a discontinued newspaper which helped others continue to form our own yet, what may we gain? ■ explore their spirituality. judgments, often on faulty data, because we don’t search Ellen Houghton—desktop out the facts, through discussion, experiencing, or sharing with others. Actually, if I’m HOUSING AND PERSONAL CARE SERVICES really honest with myself, I knew Mom was uncomfortAccessible Space, Inc. (ASI) offers subsidized one and two bedroom able with my new beliefs. apartments for individuals with physical disabilities. We have housing Why did I have to wait for her in the Twin Cities metropolitan area, St. Cloud, Brainerd, Grand to initiate the conversation?
Rapids, Hibbing, Austin, Marshall, Willmar, and Duluth. The idea of how we interpret others’ actions and often form our judgments on faulty data reminds me of another movie, A Perfect Mind. Here was a man who won a Nobel Prize and was a genius in math, but due to mental illness was more often perceived as an idiot. What if more people had actually spent time trying to understanding him by talking to him face-toface instead of laughing behind his back?
The apartments are fully wheelchair accessible and each building has a central laundry room, large community room, secured entry and an on-site caretaker. ASI also offers shared personal care services 24 hours a day, at most locations, for adults with a physical disability and/or traumatic brain injury who qualify for Medical Assistance. For more information call (651) 645-7271 or (800) 466-7722. For services or housing call Cami, for employment as a personal care attendant call Al or Angie.
Minnesota, there are several independently. resources available: There are also many other One of the first to investigate financing resources available is the Minnesota Housing to fund AT devices for your Finance Agency (MHFA). home. The STAR program They offer services to persons offers a free listing and guide with low and moderate in- on funding. An updated come who need affordable version will be available from housing. Through loans or STAR this month. other funding, they can assist with a purchase or modifica- Finding and pursuing these tions to a home, including AT resources is a challenge, but features and architectural ad- by being an advocate and aptations. being resourceful, home ownership can be a reality for Furthermore, Wells Fargo many people with disabilities. and other banks have pro- ■ grams to assist persons with disabilities when purchasing Jeni Mundl is the Assistive housing and making the Technology Specialist at adaptations needed to live Courage Center.
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October 10, 2002
EUGENICS - Cont. from p. 1 the authority of science and religion to encourage people to voluntarily practice eugenics through reproducing only if they were deemed fit by the scientific community. Larson noted, however, that “most of those pronounced unfit to marry are disabled more for how people treat them than for any actual physical or mental impairments.”
predictive gene testing, which involves testing people for disabilities that may become symptomatic later in life. Second, there is carrier testing, in which at-risk prospective parents are tested for recessive disabling genes that may be passed on to their children. Third, there is prenatal testing for genetic disabilities.
Proponents of genetic testing cite the differences between modern genetic testing and eugenics. First, they argue that there is now better science underlying the process of identifying heritable disabilities. Second, there are enhanced legal protections against discrimination of those with disabilities. Lastly, there are more sophisticated techniques for eliminating unwanted disability, such as gene therapy.
In the beginning of the 21st century, said Larson, “human genetic testing is transforming conventions for identifying and addressing human disabilities.” Genetic testing is used in three basic situations, according to Larson. First, there is
AWARDS - Cont. from p. 10 Eric Peterson, Mpls. actor and disability rights advocate; and Apollo Resource Center, part of People, Inc. in St. Paul. The Mpls. Advisory Committee’s awards will be announced on the 16th. Their new Access Maze video is expected to be given a premiere showing, and Mayor Rybak has been invited to speak. Block E is located between Hennepin Ave. and First Ave. N., and between 6th and 7th Streets in downtown Mpls. (between Target Ctr. and City Ctr.).
Larson points out that complications still exist in the process of identifying disabling genes. The main deterrent to genetic testing is resistance on the part of individuals to get tested because of their fear of discrimination on the basis of the test results. Larson quoted Adrienne Ash, a bioethicist at Wellesley College in Massachusetts, saying that “as we learn more about the role of genes in health and disease, ever larger numbers of people who never before were perceived as disabled will discover that their genetic characteristics lead them to be viewed as
BREAKTHROUGH disabled by others, most with genetic disabilities. But, notably employers and insur- the social model also poses ers.” problems for genetically disabled people. There is the Because people from all possibility of society judging classes will have the potential people against a “socially to be labeled as disabled, constructed standard of gethere is hope that widespread netic normality,” said Larson, discrimination as evidenced which would discriminate in the eugenics era will not against people who lead repeat itself. As an added “lives worth living,” despite matter of protection against their disability. discrimination, 44 states have enacted laws against genetic It seems far-fetched that discrimination to supplement modern society would emthe federal antidiscrimination brace the compulsory eugenin employment legislation, ics practices of the early 20th the Americans with Disabili- century. However, the printies Act. Forty-three states ciples of eugenics are still have also passed measures alive and well in the era of designed to protect individu- genetic testing. As Larson als from discrimination by stated, “the meaning of huhealth insurance companies. man gene testing for disability The problems of genetic will be a matter of individual testing, however, are much choices made within social more extensive than just contexts.” How society views discrimination by employers and treats those with disabilior health insurers. ties will be increasingly influenced by the technology to Disabilities are defined by identify and possibly elimiboth medical science and by nate these genetic problems. social construction. The eugenics era put forth a The challenge for modern medical model of disability society is to balance the that sought to identify heri- competing interests of elimitable disabilities and elimi- nating to correcting genetic nate them. In contrast, many disability and respecting an disability rights activists to- individual’s right to live with day feel that a societal model or without a genetic disability. of disability is more appropriate. According to Larson, this If you would like to view view holds that “people are Professor Larson’s talk, you disabled not by their bodies, may download it on the web at but by society.” http://www.jointdegree. umn.edu/conferences/. ■ Some fear that human gene testing will reinforce a medi- Rebekah Orr is a Joint cal model for the definition Degree Student in Law and and remedy of human dis- Health Services Research, abilities, which will lead to Policy, and Administration at increased isolation of those the University of Minnesota.
Cont. from p. 3 Program Benefits For students with a disability: Breakthrough offers individuals a firsthand understanding of corporate culture and the opportunity to improve their probability of employment after graduation. For companies: The connection offers employers access to, and experience with, qualified, career-oriented people with a disability, thus enhancing their diversity recruitment strategies. In other words, employers are able to tap into a skilled workforce and address employment barriers and attitudinal stereotypes.
are employed in meaningful careers, the fewer the number of people dependent on social welfare programs. Looking to the Future Program leaders, including The Disability Institute and the Minnesota Business Leadership Network, hope to significantly expand the Breakthrough program by increasing the number of employers and the number of students with disabilities who participate. Although the current program includes employers in or near the Twin Cities, plans are underway to expand the geographic reach of the program as well. Partners will begin working with companies during the fourth quarter this year to identify internship opportunities for Breakthrough in 2003. ■
For educational institutions: The internship experience offers educators and counselors valuable insight that will ultimately lead to better education, training, and placeFor more information on the ment. Breakthrough program, conFor taxpayers: The more tact The Disability Institute at people with a disability who 952/935-9343.
Relevant Statistics • Today, one out of five Americans has a disability. The number of people with disabilities, ages 17-44, has increased by 400 percent over the last 25 years. • In Minnesota, 19.4 percent of the population has a disability. • According to the U.S. Department of Labor, 48 percent of people with disabilities—with a college degree—are unemployed. • To get a job, people with disabilities must, on the average, apply 10 times more than people without disabilities. • Nearly nine out of 10 employers who have hired people with disabilities would encourage other companies to do the same.
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October 10, 2002
Access To Employment
Employment ads are $14 per col. inch; Oct 31 is the deadline for the Nov 10 issue. Mail to: ACCESS PRESS • 1821 University Ave. • #104S • St. Paul, MN 55104 FAX 651-644-2136 • E-mail: firstname.lastname@example.org ADMINISTRATIVE ASSISTANT Faegre & Benson, a major Minneapolis law firm, has an exciting opportunity for a secretary or Administrative Assistant in our Information Services group. This person will report directly to the Director of Information Services. Responsibilities include: answering phones for IS administrative staff, maintenance of department calendars, files, invoices, vendor contracts, service agreements and software licensing. This person will also be responsible for the distribution of department mail in addition to coordinating and scheduling department meetings. Successful candidates should have 1 year secretarial/administrative experience. Spreadsheet and database experience a plus; keyboarding at 50+ wpm; excellent organizational and communication skills and a teamorientated work style. We offer a professional work environment, competitive wages and an excellent benefits package, including a discounted bus program Metropass. For additional information about Faegre & Benson, visit our web site at www.faegre.com. Please send resume and salary history to Human Resources:
DIRECTOR OF DEVELOPMENT AND ALUMNI RELATIONS General College—University of Minnesota—Twin Cities The General College at the University of Minnesota—Twin Cities invites applications for the full-time position of Director of Development and Alumni Relations. The director, who will report directly to the dean, is responsible for the planning, implementation, and evaluation of annual and long-range development and alumni relations activities. Essential qualifications include a Bachelor’s degree; three years of experience in formal, direct development or fundraising; and demonstrated success in major gift prospecting, corporate funding, annual fund solicitation, and planned estate gifts. Desired qualifications include experience as development director within a higher education setting; marketing, sales, or public relations experience; demonstrated success in recruiting, training, and managing staff and volunteers; evidence of being highly energetic, self-starting, creative, and entrepreneurial in formulating ideas, opportunities, and prospects for development activities; evidence of organizational and managerial skills; and demonstrated ability to communicate clearly and persuasively, verbally and in writing. A complete application consists of (1) a letter of application describing your interest in and evidence of accomplishments related to the position, (2) a resume or vita, (3) examples of recent development activities or projects and a description of your role or responsibilities in those activities and the project outcomes, and (4) the names, addresses, and phone numbers of at least three professional references relating to your recent development work. Send materials to Annette Digre, Search Coordinator, General College, University of Minnesota, 240 Appleby Hall, 128 Pleasant St. SE, Minneapolis, MN 55455, Fax 612 625-0709, e-mail email@example.com. The application deadline is 4:00 p.m., Monday, November 4, 2002.
Legal CONSTRUCTION LAW PARALEGAL Litigation Minnesota’s second largest law firm is seeking an experienced litigation paralegal to work in our General Litigation practice group. Responsibilities include investigation, research, discovery, trial support and management of documents and databases. Must be able to travel. Candidates should have 10 years of paralegal experience in complex litigation, strong knowledge of litigation technology software, and excellent communication and client service skills. We prefer a 4-year degree or paralegal certification.
Faegre & Benson offers competitive wages and an excellent benefit package, including generous paid time off, Firm-paid sick child care service, emergency back-up child care services, retirement savings plans, transportation discounts, etc. To learn more about our current job opportunities and for additional information about Faegre & For a complete position description, call (612) 625-2880 or Benson, visit our web site at: www.faegre.com. For conview the college website at http://www.gen.umn.edu. sideration, please send reThe University of Minnesota is committed to the policy that all sume and salary history to persons shall have equal access to its programs, facilities, and Human Resources: employment without regard to race, color, creed, religion, national origin, sex, age, marital status, disability, public FAEGRE & BENSON LLP 2200 Wells Fargo Center FAEGRE & BENSON LLP assistance status, veteran status, or sexual orientation. 90 South Seventh Street 2200 Wells Fargo Center Full- or Part-Time Minneapolis, MN 55402 90 South Seventh Street STAFF ATTORNEY Fax: 612-766-1763 Minneapolis, MN 55402 E-Mail: HR@Faegre.com Fax: (612) 336-3846 Central Minnesota Legal Services seeks staff atty for its St. E-Mail: HR@Faegre.com Cloud office, full- or part-time. Service areas: fam. law; Equal Opportunity Employer housing and govt. benes. with emphasis on fam. law. Svc. Equal Opportunity Employer work incl. litigation, com. legal ed., com. outreach. Travel required. Salary: DOE up to $38,830 full-time. Exc. Benes. RESOURCE CENTER Employer paid life/full family health insurance. Send resume MANAGER to Sarah Shella-Stevens, Mg. Atty., CMLS, 830 West St. Germain, #309, PO Box 1598, St. Cloud, MN 56302. Exciting new opportunity to Application deadline: Oct. 1 or until filled. EOE. design and manage a range of support services for people DEPUTY DIRECTOR with disabilities living in a number of independent living Cont. from p. 4 complexes within the Twin Mid-MN Legal Assistance Cities area. The first complex seeks dep. dir. for its MinneOversee the single goal that we’re out of universities or other multiin Robbinsdale has just re- apolis division. cently opened. Assess skill operations of 3 offices repre- to achieve. It also tells our purpose research facilities. levels, select and orient resi- senting diverse pop. including donors that, unlike Reeve and dents, and assist them in low-income, seniors, immi- the others, none of our money We also know that it’s up to obtaining support services. grants and disabled persons is diverted into care issues. us, the spinal cord injured, to Manage a variety of issues with full range of civil legal Care is important, yes, and push the envelope for a cure. Repres. includes there are lots of organizations Most of us don’t have the and advocate for resident and probs. family needs. B.A. in social service work, complex lit., providing care services, but at resources of Christopher work or related, Master’s legis. advoc. & comm’y. ed. some point we need to bite the Reeve, and we’ll never get to preferred, and 2 years case Req’d: Real concern for bullet and do what is neces- appear before Congress, but management or human ser- needs/rights of low-income; 7 sary to find a cure. each of us can do somevice management experience. yrs. legal svces. or sim. exper. thing—and if we work toTrial, appellate, At SCS we’ve finally been gether that adds up to a lot. If Knowledge of Hennepin Pref’d: County disability related so- mgmt exper. Salary DOE; able to address all these we don’t, we’ll have cial services and ability to fully-pd. fam. hlth. ins., lib- problems with the opening of no one to blame but advocate. Send resume to: eral vac. Start: As close to our own independent research ourselves. Mary Perkins/NPLHC, c/o 11/1/02 as poss. Resumes: lab. There our researchers are Reach for Resources, 1001 Jeremy Lane, MMLA, 430 able to concentrate solely on Does this make sense to Highway 7, #217, Hopkins, 1st Ave N, #300, Mpls, MN spinal cord injury cure re- you? If it does, we’d love MN 55305. Resumes ac- 55401-1780. EOE. search without the distrac- to have you come join us. tions and competing agendas SCS is the place where what cepted until position is filled.
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Stairway lifts for a split staircase (2 units). Can be modified for a single staircase. Will separate. Selling for $2,200/unit. 651-4152895.
Now available at iuniverse. com - bookstore: A Portrait of Salespeople by David A. Ross. A collection of funny, bizarre, comical, and amusing stories. Excerpts available at FOR RENT www.startpress.com. Also available via www.bn.com Lewis Park Apartments: and www.amazon.com. Barrier free housing with wheelchair user in mind. FOR SALE Section 8 subsidized. Oneand two bedroom units. For 1986 Dodge Ram van. more information on availSunken floor, automatic trans- ability call (651) 488-9923. mission, air-conditioning. St. Paul, MN Equal OpportuNew tires, exhaust, battery, nity Housing. windshield wiring, and carburetor. Excellent driving and Holmes-Greenway Housing: ramp operation. Mint condi- One and two bedroom aparttion. 94,300 miles. MUST ments designed for physically SELL. 651-437-7732. handicapped persons. Convenient SE Minneapolis locaBruno wheelchair or scooter tion. Call (612) 378-0331 for curbside lift. Excellent availability information. Equal condition. Used very little. Opportunity Housing. $950 (sells new for $2,300). 763-788-7186. Seward Square Apartments: We are currently accepting 1997 Dodge Ram 2500 applications for our waiting Maxivan. Automatic, V-8, list at Seward Square Apartair, raised roof, Braun auto- ments in Minneapolis. Seward matic lift, tie-downs, ADA Square is barrier-free housing approved, good condition. and is federally subsidized. Must sell. $6,500. 763-540- For an application, please call 9997 or 763-591-0759. (612) 338-2680. Equal Opportunity Housing. 1993 Dodge Caravan Conversion with remote control MISCELLANEOUS rear entry ramp with dropped floor. V-6, 4-speed automatic “Words of Love” is a CD by transmission, air-condition- Snoopi Botten, a musician ing, ABS, cruise control, with cerebral palsy who power locks and side mirrors, writes and performs inspiradeluxe light group, AM/FM. tional songs using a synthetic SHARP. Must see to appreci- speech system. To order, call ate. Must sell. 612-866- (612) 872-7233 or visit 1758. Snoopi’s website at http:// hometown.aol.com/dectalk/ myhomepage/index.html.
you can do will make a The Twin Cities Spinal Cord difference. After all, what Society can be reached at could ultimately be more 651-690-5011. Or visit http: //users.aol. com/scsweb/ important to you than a cure? index.htm. It’s your cause, it’s your future, it’s your life— and you don’t have to be Superman to do it. ■
October 10, 2002
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NAMI Northeast Contemporary Services Headwaters Fund Resource S.M.I.L.E.S. United Cerebral Palsy of MN -------------------–------------------------------------- IN HONOR----------------------------------------------------Anne Henry by Karen Adamson • Cecelia Bilbrey-Baer by Patrick J. Bilbrey • Charlie Smith by Tom & Mimi Fogarty • Charlie by Fern Rogstad • Jaehn Clare by Candice Warne Kyle by Joe & JoAnn Zwack • College of Saint Catherine’s Occupational Therapy Masters Program by Steven Anderson • U of M Occupational Therapy Education Program by Erica Stern -------------------–------------------------------------- IN MEMORY----------------------------------------------------Charlie Smith by Anita Boucher & Jeff Bangsberg • Grandma & Grandpa Laughlin, Shamma & Frank Haas, & Fred Benjamin Jr. by Phyllis & Fred Benjamin III Bill & Renee Smith by Becky J. Bugbee-Tong • Pete Chevrette by Mike & Jan Chevrette • Troy Fahlenkamp & Valerie Birosh by David Dreier • Mabel Heuer by Dawn Doering Charlie Smith by Lee Ann Erickson • Bill Smith by Joe & Peg Figliuzzi • Charlie Smith by Andrew Groven • John Hardy by Martha Hardy • Miss Irene MacKaloney by Roger Hoffman Charlie Smith by Barbara Kane • Ruth Riggs by Corbin Kidder • Charlie Smith by Tracy Kochendorfer • Charlie Smith, our cousin, by Henry Pattridge & family Uncle Bill & Aunt Renee Smith by Mary & Henry Pattridge • Charlie Smith by Sister Kenny Institute • Bill & Renee Smith by Helen Thompson Bill, Renee, & Charlie Smith by Kathy & Paul West • Charlie Smith by Linda Wolford • Tony Lebahn by Linda Wolford -------------------–------------------------------------- IN KIND (time & services)----------------------------------------------------Anita Boucher • Wendy Brower • Jeanne Calvit • Pete Feigal • Martha Hage • Laurie Ann Hobbs Ellen Houghton • Mike Janssen • Jeni Mundl • Deb Olson • Rebekah Orr • Rick Ryan • Jon Skaalen • Ray Tricomo • John Tschida Disability Health Options Committee Members • Disability Law Center • Minnesota Consortium for Citizens with Disabilities • St. Paul Social Security PASS Cadre
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