October 1998 Edition - Access Press

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Access Press SOURCES

Address Metro Mobility ~%dPCA Wage Questionmaximum wage paid is withoutp&lic&sit, m a t i s $8.25 an hour, and many -;one of the reasons I support

ereisfielastinstallment of ACCESS PRESS'S series of disability-related questions submitted to the 1998gutKmatT,ria1candidares.

Ea&-- candidatemceived the following background infor. Responses were limited to 3@l words per question and they are printed here, verbatim, in

earn less.

Read their answers carefully and remember to VOTE No

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Light Rail Transit,and will insist that whatever type of rail ar and configuration is choen dso make*disabled community.

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Mo.bi1& Local Company Features 81: MFtm of the MdtmpoZ1ikzt1 ~~rtncij&'is iu'&& pro~id&;4 Adaptive Computer Technology . -.-, .

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4 Disability Culture Caste System p. 8

"Governors will never be awed by the voice of the people, so long as it is a mere voice, without overt acts."

Jaseph Priestley

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October 10, 1998

Access Press

Metro Mobilitv

Walk For Justice Raises Funds For Community Groups

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*Phone Service Disrupte Handicabs Affected glitq?f a ihe,pbone sysem Se$t4 8 Gevented MetroMobilitycustomerswho use Handicabs as their pro-

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viderfrom reservingrides.Th day after Labor Day custom who called Handicabs to reserve a ride got a busy signal or "We deeply regret the jig~&I venience to our customers," said Metro Mobility General Manager Dave Jacobson.

"Fortunately, customers promptly informed our Customer ServicesDepartment so we could get an early start on working to resolve the problem withU.S. WestandLucent I

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ACCESS PRESS

................................................................. . m ? A . Smith,Jr. ............. ........,.................................................... Chrles F- Smith

;Co-FounderIPublisher(1990-1995) ~itor/~ublisher/~~~ounder ,

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ponsored by the Headwa- importantstep formany people particular, Larry Lubbers ters Fund, the thirdannual in doing something they've Lisa Schultz, have been Walk far Justice was held on neverdone before. It's great to lenging each other to see who Sunday,September13atBoom hearACTmemberssay things can raise the most money.

Island Park in Minneapolis. 93 like 'Ican go and askpeoplefor They each raised over $400 groups participated, including money now and they give it to this year. And, it's alot of fun." several disability organiza- us."'

While pledges are still coming tions. Headwaters sponsors in, to date ACT has raised the Walk as a way to assist Raising m 2 i ; ~ l a l than $1,500 from this year's local organizations to raise change is a constant struggle. w&. funds, while also drawing at- The Walk for Justice benefits tention to the important work many organizations that are The Walk for Justice supports of small, grassroots groups. too small to sponsor a suc- Headwaters' mission of pro- :* cessful fundraiser of this kind moting progressive social Advocating Change Together on their own. Often, organiza. The Fund also pro- ,

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to restore the graves of people withdisabilities who have died in state institutions and were buried in numbered graves.

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Advertising and editorial deadlines are the 30th of the month preceding pu6liiatlon; specla1scheduling available for camera-ready art.

Access Press is available on tape. Call MN State Services for the Blind, 642-0500 w 800-652-9000.

Inquiries should be directed to: ACCESS PRESS 1821 University Ave. W. Suite 185N St. Paul, Minnesota 55104 (651) 644-2133 Fax (651) 644-2136

self-advocacy and the cemetery restoration project. If you would like more information please call Rick at Advo-

SPECIALIZED TRANSPORTATIOPJ

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 w ~ k ~ frequency. Classified ads are $8.00, plus 35 cents/word over 20 ~ o r * ~ -

includes photos of individuals and stories,in their own words, of the differences in their lives in and out of institutions. Ten

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529-5019

483-9143

C A ~ MEDICAL ~ ASSISTANCE PROVIDER

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FREEDOM assistivecomputer contfrom p. 1 technology

tivecomputer technology recognize FOS as a leader in the - . field and solicit its suggestions for product improvement. Mark is often called upon as a learning disabilities expert.

"If you want to really serve an industry, you need to have people who can understand that industry," says Mark.

That's why he recruits employees who came to him as

for learning disabilities. For a person who quadriplegic, forerample,ane~vironine& control unit gives - him voice control over his telephone, computer, lights, thermostat, electric bed and doors,W a n d VCR. Mark also teacheslearning-disabledclients tousesoftware such as Kunweil3000, which magnifies text onto the screen while reading the words aloud in syntheticspeech. The

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Access Press Avenue in south Minneapolis in July.FOS isnow moreaccessible local clients. "We I wanted to integrate into the culture we serve," explains Mark. Their handicapped-ac- This year's convention is becessible building is on an ac- ing held on Friday and Saturcessible city bus line. day, October30-3 1,1998,atthe Kelly Inn in St. Cloud, MN. FOS offers what the staff feels The convention opens with a are themost effectiveadaptive . computer hardware and software packages available from various manufacturers;includ-

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1 Arc Minnesota's State Convention morning-longsessionon Consumer-Owned Housing; includes workshops,awards, and meetingsforchapterandstatewide leaders; and concludes

with the annual meeting. For moreinformationortoregister, call 612-827-5641 ortoll-free 1Wk582-5256.

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1 ~dvisoryCouncil Positions

reen readers and enlargers, Braille systems, voice recognition products, optical character recognition systems, and

positions," he explains. "And it's beneficial to us because they have the experience of being the end user, of knowing what it's like to live with a disability. If someone calls and knows they're talking to a user, it makes a bigdifference."

Council on Mental Health and its Subcommittee on Children's Mental Health. The Advisory Council advises the governor and heads of state departments about policies, programs and services affect-

makes recommendations to the Council on policies, laws,regulations and servicesrelating to children's mental health.

about 1:Wpm. Formore infor-

. mation or to request applica-

tion materials, contact Bruce Weinstockat 651-297-4163,fax 65 1-296-773 1, or e-mail The four-yearterms will begin Bruce.Weinstock@state.mn.us. in January and meetings will be

Election Judges Needed

Director of Technical Support Jon Pierson, blind from birth, was tuningpianosafterlosing his job as a radio broadcaster and writer. Now he teaches blind and low-vi-

fits clients with ergonomic furniture that suits their special needs. They sell motorized, adjustable, moveable computer tables, bed tables, er-

Library Adds Adaptive Equipment eSt.PaulPub1icLibraryhas color, high-contrastelectronic sual conditions. The Readers

One of FOS's central goals is right products for their needs magnifyingtheimage on a full- prove readability for some vi- Wilcox, 266-7071.

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taneously punching it into a Braille bar. Accordin about 30 percent of blind people are employed, and about 30 percent of the working blind use computers at work.

Shaping Your Child's Fu- Health Care and Probate, ture by Dr. Sam Goldstein, November 2 and 2,7-9pm.

Thursday, October 22, 1998, Getting to Wotl-,Thursday, --3p.

November5,6:30-9:30pm.

7-7770 (TN); 1-800-537- The In& 37 (toll-free);or fax at 612- tion Program, tober27,6:30-9:30pm.

mance. Videotapes oftheinter- who don't need the late view can then be shown to greatest models. employers.

TOlearn more about Freedom FOS will be able to train more of Speech, visit its web site at Well-known Deaf poet people with the addition of its www.freedomofspeech.comor Clayton Valli will perfOrm his new training center. Begin- call (612) 544-3333.. ning in mid-October, FOS will offer group classes on using adaptive technology. Previously, training was done only on an individual basis or HOME HEALTH CARE SERVICE through video tape. The training room is equipped with an 24 HOUR ON CALL SERVICE assortment of adaptive Business Manager Tim' ergonomic furniture and 10 Dallmann had back problems cutting-edge assistive comSpecializing in Full Home Care Service that made him prone to repeti- puter stations running Wintive stress injuries and cre- dows 98 (or oneMac) and livePersonal Care Assistants ated barriers to employment. timeT-l+internetaccess. Class Home Health Aides Homemakers He now works comfortably in fees are low, and students can Live-in Caretakers Skilled Nursing his ergonomic office at FOS. retake a class twice without charge within six months.

Rehabilitative Services Mark's strongest expertise is i in environmental control and Physical 1Occupational/Speech Therapies

Assistive Computer Technologist JonTellekson ("J.T.") is a former math teacher who developed hand problems and turned to voice recognition software. He now is the voice recognition expert at FOS, teaching people to operate their computers, dictate documents and play games by speaking into a microphone, with little or no hand movemerit.

1 Clayton VaIIi

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Comfortable Sedan Transportation for those with Special Needs MA Recipients

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Performance original ASL poetry Friday, October 16,7:30 p.m. at the Earle Brown Center on the St. Paul Campus of the U of M. Interpreters provided. Additional disability accommodations available by calling 6261333(voice/tty). F o r d i t i o n s

call 624-3275 (voice).

Generalticketprice $5.00,$3.00 for members of S..4.S.E. &for studentslstaff of the U of M, free tomembers oiThe Friends of St. Paul Public Library.

Il Advocacy Video Released

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"YourKey to Freedomn

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PCA Provider Organization MedicareCertifiedIMedicalAssistance Waivered ServiceslPrivate

2010East Hennepin Avenue, Bldg. #5 Minneapolis,MN 55413

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new videotape, entitled "SELF-ADVOCATE," has re cently been released by Express Yourself of Minnesota, Inc, (EYM).The 30minutevideotape shows people who use augmentativecommunication devices overcoming barriers to independent living through self-advocacy. It provides an overview of communicative exchanges between verbal individuals and those who use augmentativecommunication devices to independently interact with society.

group members. It is hoped that a glimpse into the lives-of some me-mbrs ni ight inspire and assistothersw ho arestruggling with commu~nication issues in their own lives. @

All proceeds from the sale of this video will significantly aid the mission of EYM, which is to empower peopl~:to become independentcommunicatorsin their daily lives. A VHS copy of "SELF-ADVOCATE is available from Peg Johnson, Express Yourself of Minnesota, Inc., POBox 19227,Min"SELF-ADVOCATE" was p m neapolis, MN 55479-0227 for duced by EYM's augmenta- $24.95 (US dollars)plus $3.95 tive communication support shipping and handling. i

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October 10, 1998

4

Access Press ISouthwestern Center For Maps For The Labyrinth Independent Living (SWCIL)

by Peter Feigal On Mental Illness

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by Steve Thorson

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ne of the biggest obstacles for those battling mental illness/brain disorders is simply how to find the help they need. With literally hundreds of organizations and progrpms in theTwinCitiesdone, trying to find the one most suited to your needs within this labyrinth can become a huge undertaking. 1personally remember being in despair and crisis, needing help NOW or just someone to talk to, and

Minnesota Depressive & he Southwestern Center sit systemserving these towns, Manic-Depressive Associafor Independent Living providing services is a chaltion(MDMDA)(612)379-7933. lenge. Because of the travel (SWCIL)isaprivate,nonprofit, Free education and support consumercontrolled, nonresiinvolved in serving our rural groups by people W ~ Qhave area, SWClLhas four full time dential, community based orbeen there. ganization whose direction is staffthatworkfromhomebased Ramsey County Crisis (651) determined by and for people offices. The home basedoffice 298-4545. Phone counseling MinnesotaBio-BrainAssociawith disabilities.

Emphasis is allowsshorterdistancefor staff outreach intervention. 8 tion (612) 922-6916. Freesup placed on improving the qual- totravel allowing more time to am-midnightM-F,11am-7pm port groups with additional serve consumers and less emphasis on the holistic ap- ity of life for all people with weekends. stress for everyone involved. disabilities who live in southproach, very respectful. western Minnesota. IndepenThe Crisis Connection (612) dent living services through SWCIL has two part time staff 379-6363. 24-hourc~sisphone People,Incqomted (651)774001 1. Hennepin & Ramsey SWCILpromote personal con- membersthat workas outreach county drop-in centers, edu- trol, individual choice, societal persons in Nobles and Murray inclusion and equal access. counties. These staff members provide people with asalmost too much to attempt. tdlyf11~m(651)645-2g48. ness, blindness),crisis houses.

Independent living programs sistancewith general informaFree&ocacy, education, and They are the best kept secretin offer a wide range of support- tion and referral available Recently r v e h d t h e o ~ ~ o r t u -supportgroups around the city MNive services that are provided through the Center representnity to speak to some of the andst&;afreel2+r&course ment a1 health groups at f o r f a m i l y m e m b d e d L m - Vail Place H~pkins Clubhouse as a means to assist people ing local, regional, statewide with disabilities in obtaining and national resources. InforFairview Riverside hospital, ' ilytoFamily;" and st&ngthis (612)%&%22,VailPlaceMintelling the folks about the re- fall, a f ~ ~4-weckcOUTSefor e neapolisClubbouse(612)824- and maintaining the greatest mation andreferralisavailable mwxsavailable to them once fightingmentalill- 8061. Safe drop-in Centers, control over their lives. Our to anyone interested in securing disability related informathe HMOs kick them out of the ness/brain disorders called multi-program~&emplopent coreconsumer servicesinclude tion or in accessing an approAdvocacy, Cross-Disability oasis and back into the cold. "Bridp." opportunities.

PeerIGroup Counseling, Indepriate resource referral. hard world. Rememberingmy pendentLivingSkillsTraining

Public education and awarenessis acrucial serviceoffered

by SWCIL. This service includes seminars and work shops on a variety of topics to inform agencies and the pub. lic of pertinent disability is-

vices, we offer a wide array of other independent living sewices which are available based on individual need.

one basis and in groups. The majority of the groups take place at schoolsin aclass room setting. The service for the

bility . Seminar and workshop topicsinclude disability awarene~s/sensitivitytraining, the Americans with Disabilities

wood, Murray, Nobles, Cottonwood, and Jackson, with services being expanded to Lincoln and Pipestone counties. Requests for individual servicesoutsideofthesecounties are considered on an individual basis. The largest town in our area is Marshall with a population of approximately 12,000. Since southwestern

Our services are designed to meet the specific needs of persons with all types of disabilities. Consumers are responsible to develop and control their own independent living goal plans. Staffmembersprovide assistance, support, and encouragementto the consumers in establishingand achiev-

Hennepincounty CrisisHome progrrun(612)347-3170. short tern dultfostercare forpeople who don't need hospitalization.

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having a consumer be able to move from a nursing home to an apartment and be able to attainormaintaintheirdesired level of independentfunctioning.

SWCILalso conducts several socialrecreation groupactivitiesthroughouttheyear. Some of these group activities include: Christmasparty, Valentine party, Halloween party and a Summer party. The social recreation group offers the opportunity to gain team building experience, develop cooperativerelationships, and increase interaction with 0th. ers.

nesota Building Codes.

Ifyou wouldlikemoreinfonna~ tion about SWCIL and the services we provide, please contact us at: Southwestern Centerfor IndependentLiving (SWCIL);109 S Fifth Street, Suite700,Marshdl,MN56258 Phone: 5071532-2221 (VflTY) 1-800/422-1485(V-FAX:

an agriculturalarea with many goals. This may range from means.net Web site: http:/l smallcities/townsandnotran- personal daily living skills to www.macil.org/swcil/.

calls for the suicide helpline.

beginningofthe shift to sign in for an appointment.

Handi MedicalSupply 2505 UniversityAvenue West St. Paul, Minnesota 551 14 At Hwy. 280 & University Avenue

Visit ~ u i ~ a r gFully-stocked e, showroom open to the public.

Wheelchairshith complete repair service ~alkers/canes,crutches Bathroom safety aids IncontinentRlrologicalsupplies

Commode& shower chairs Ostomyland wound care Blood pressureequipment Diabetic supplies

GREAT SERVICE & PRICES We offer 24 hr. Emergency Service exclusivelv to our regular customers. Free UPS and deliveries to Mpls., St. Paul & Suburbs.

We bill M.A., Medicare. Blue Cross/Blue Shield. Media nad lmnv other insurances

MA TOCover Viagra innesota will provide provisional coverage of kgra under its Medical As:ance (MA Medicaid) Prom,effective Sept. 21,1998.

The decision stems fiom a requirement of the federalHealth CmFinancing Administration (HCFA). States participating in HCFA's Federal Drug Re-

bate Program (Minnesota receives $31million annually in rebates), are required to cover Viagra for Medicaid (MA) recipients, or lose their funding

c* HOME HEALTH CARE

Home Care Services Available 24 hours per day Specializing in the care of Children* Adults* Elderly We provide Personal Care Assistants Home Health Aides Homemakers Live-in Caregivers Nursing Our Rehabilitative Servicesinclude: Physical/ Occupational/Speech/RespiratoryTherapies PCA Provider Organization MAIWaiverlMedicare Certified

544-0315 or 1-800-231-0315

The state will postpone coverage under General Assistance Medical Care (GAMC) and MinnesotaCare health care programs (primarily funded by the state) until mid-April of 1999, pending legislative review and review by the state's DrugFormulary Committee.

Those who qualify to receive Viagramust be male and 1801 older and have a medical diagnosisjustifyingthedrug. Prioi authorization is required and dosage will be limited to six tablets a month.

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October 10, 1998

Access Press

Hello Nicole:

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IReliuion & Disability

Good Religion - Bad Religion

by Rich Johnson their questioningmindslead y role as achaplain is to Good religion helps people them. In good religion,there help people access and to assesstheir situationhonestly and realistically and areno stupid, illegitimate,or use their own spirituality in heretical questions. order to enhance healing and helps them to adjust to the challenge of the disability rehabilitation. And although 1 without retreating into fan- 4) Simplistic thinking. Good believe that all persons are tasy or magical thinking. religion helps people tusee spiritualregardless of whether or not they are religious, more the complexity of life and reminds them that there are often than not religion is a pri- 2) Uncompromisingjudgmenmary vehiclefortheexperienc- tal attitudes. When religion no easy answers. Too often ng of people's fostershateful, condemning people withdisabilitieshave attitudes toward those of been given simple answers: differingfaiths, it is bad reliYou have a disability'beUnfortunately, not all religion gion. Good religion fosters cause God is punishin&ou is good religion. I have oblove and openness to 0thoryourparentsforsometerserved that there is a potential ers. Good religion recogriblesin; you haveadisabilin religious systems to work nizes that we can all learn ity to teach you some great harmaswellasgoodinpeople's from one another in our lesson such as humility, palives. And with regard to dissearchforultimatetruth. Itis tience, or faith, you have a ability, it seems tobe more true people who are insecureand disability baause t$e h i 1 that people can be harmed by uncertain that need to play worked mischief in your r - -,-. certainreligiousbeliefsorprao the game of "my religion is body; you have a disability so that others may have the better than your religion." opportunitytopracticecharTolerance, the genuine In Father Leo Booth's book, appreciation of differences, ity or good works. These is the product of good relikinds of answers are unsatWhenGodBecomesaDrug, he lists some symptoms of what gion. isfying and sometimes inhe calls "religion addiction." I sulting. As the book of J& choose to call these symptoms 3) Inability to think, doubt or teaches us, bad things do "badreligion." Iwouldliketo question information or happen to good people. elaborate on some of the ones authority. Good religion Good religion cannot be reencouragestxiticalthinking duced to slogans and and allows people to exambumper stickers. We need .

1)Magical thinking that God ine, evaluate, question, and to struggle and work at ti& will fix you. Many people challenge doctrines and challengethatdisabilityp with disabilitieshave fallen practices. If you belong to a sents to our bodies, minds, prey to this kind of religious religious group that makes and spirits. thinldng,eitheroutofdenial you check your brains in at the severity m p m m ture of their disability

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g or believing sopething to be me does not make it tm. S- with disabilities have blamed themselves for lack of faith when they are not "cured."

ourspiritual growth. When and peace that emerge we are truly free to seek yW ti& k& p y d good relitruth, we ane en&&wgion.

1 . the truth that makes us free.

Bad religion restricts and Rich Johnson is ;he Chaplain forbids people to go where at Coumge Center.

from physical exercise. If you are willing to explore, adapt, and abandonyour mental inhibitions, you may be totally surprised at all theexercising you can do.

tained through physical training has been a combination of trial and error, experimental, and innovation. I learned that physical exerciseprograms can be designed to accommodate your abilities. My journey towards physical fitness is incomplete, perhaps it's not a journey anymore, but a life style.

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by Rosalind K. Sampson

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ou see them everywhere -on billboardsand tele vision, in magazines, movies, health clubs, etc. What are they? Hard bodies that are chiseled and sculpted to perfection.

In aworld wherethe physically fit body is glorified, it can be intimidatingfor someone with a disability to enter a facility where the perfect body is manufactured. However, in July, 1997, I decided to be courageous and start my personal journey toward physical fitness at a health club. My decision to get into shape was encouraged by a good friend and triathalon competitor, Laura, who also recommended a personal trainer to me.

I am not a typical client. I share many of the same concerns: losingweight, developing more muscles, increasing stamina, and enhancing self-confidence, but I am a 1Cyear post spinal cord injury T4/T5 with partial paralysis who uses a wheelchair. Prior to the injury I sustained at the hands of a drunk driver, I was an intrepid

jogger, but I had not exercised the rowing machine, the UBE and wheeling lapsinmywheelregularly since. chair. My regimen included My trainer met thechallengeof working out in the weightroom training me with great vigor 2-3 times a week. and zeal. Even though he had not trained anyone with a mo- Approximately 4 months into bility impairment before, my fitness program I had noBradley's upbeat personality ticed somepositive changes in and willingness to train me my body. My stamina had through some unconventional increased, I had lost approxiand experimental methods, mately 10-15 pounds, my helped me to release some of muscle mass was taking on my trepidation toward train- form, and I was feeling woning. After a physical assess- derful about working out. But, ment and plenty of dialogueon I had been overworking my my goals andexpectations, we upper extremities,resulting in chose the fitness center at the a shoulder injury. My 3 times YWCA. This facility provided a week of vigorous physical me with a handicapped friendly training was converted to environment and the opportu- physical therapy. nity toexplore various avenues After about 3 months of physito physical fitness. cal therapy the shoulder had My journey toward physical responded very well and I fitness is somewhat limited by slowly eased back into my fitmy inability to use my lower ness training. I have been extremitiesindependently. So working out for the past three the challenge was to find ways months and usually go to the tostimulatemy cardiovascular YWCA 4-6 times a week. My systemusingmy upperextremi- new method of exercising has ties. To my surprisethere were become one of my greaterjoys more options for me than I was in life. I have found out that aware of. Bradley helped m: to having a physical disability design a format that included doesn't always exclude you

race and I was the first and only woman to enter the race in their 12 years of racing. I applaud myself for having the fortitude tocompete with the men. That experience has inspired me to consider participating in fuRecently, I accepted an invita- ture races for the purpose of tion to compete in the Veterans staying in shape.

5K Roll/Run/Race. This was my firstcompetitivewheelchair The knowledge I have ob-

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HOUSING AND PERSONAL CARE SERVICES Accessible Space, Inc. (ASI) offers subsidized one and two bedroom apartmentsfor individualswith physical disabilities. We have housing in the Twin Citiesmetropolitan area, St.Cloud, Brainerd,GrandRapids, Hibbing, Austin, Marshall, Willmar, andDuluth.

The apartments are fully wheelchair accessible and each building has a central laundry room, large community room, secured entry and an on-sites( caretaker.

AS1 also offers shared personal care services 24 hours a day, at most locations, for adults with a physical disability andtor traumatic brain injury who qualify for Medical Assistance.

For more information call (65 1)645-727 1or (800) 466-7722. For services or housing call Leigh,for employment as apersonalcare attendant call Sean.

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Accessib*eSpace, Inc.

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October 10, 1998

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I' 1 GOVERNOR8

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Access Press ~ont.tromp.1

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sion, the legislature also a p question is answered, we need what can be done based upon the problems that are limiting majority of members of the

Q1: If elected; what would you do to improve Metro Mobility service?

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= ' propriated a three percent cost- to look at the feasibility of ap- availableresourcesrather than the numbers of people enter- Metropolitan Area Special ;

of-living adjustment for providers of services to the disabled, which again included PCAs. This has translated into an eight percent increase in :. salary and benefits over the past two years for PCAs. As Governor I will support the ., . . . - current legislative practice of providing COLAS for PCAs . and other providers of services - .. to the disabled and elderlv. ;C

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plying that solution to the suburbs. More people who use MetroMobilityliveinconcentrated areas in the inner metropolitan area. This means that the system can schedule pickups and drop-offs in a timely manner,withlimiteddowntime between stops. In the suburbs however, people are more scattered which often means thetripscovermoremiles, take - longer and there is more down .+ time for the vehicles between dropping one person off and picking another person up.

This means that either Minnesota will have to spendsignificantly greater sums to purchase more vehicles and hire more driversand mechanics to transport small numbers of people with disabilities in and around the suburbs, or that services will need to remain somewhat limited.

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~ 1If:elected, what would

In an ideal world we would have the resources to provide Metro Mobility whenever and wherever it is needed in the entire expandingmetropolitan area. Unfortunately both money and personnel are limited, and we have to decide

you do to improve Metro Mobility service?

The first question is what h a p pened over the past two years to improve the service within theinnermetroarea. Oncethat

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AWM~CIPLENTS:

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~ r n ~ l o of ~ ethe r yt:ar (ZOO+ employees): . - . - .

American Express Financial Advlsors * Employer of the year (less than 200 employees Colonial Craft Distinguished Service: Norma Klaehn Public Personnel of the year: Judy Schuck QJllLYU-UrOJ V l l 1 I

or 1-800-945-8913 V m Y Elmail:council.disability@state.mn.us Fax: 65 1-296-5935

I

our wish list. This may mean ing the PCA field. that individuals with disabilities who wish to rely upon Metro Mobility may be forced to live in the innermetropolitan area, but this is the same type of limitation that able bodied persons who do not have cars accept when they choose to rely upon the bus system. I wish1could promise to significantly expand the Metro Mobility system,howeverIdonot believe that either the personnel or the money is available, and1will notmake a campaign promise that Idon't think Ican Q1: If elected, what would keep. you do to improve Metro Mobility service?

42: If elected, what would you do to improve thePCA situation?

Transportation for people with disabilitiesmustbereliable and There is no easy answer to thii affordable. Without good question. The pay that PCAs paratransit services, we deny receive is comparable to that people with disabilities the received by nursing assistants. possibilities for recreation, If the state increases the sub- education and employment. sidies it pays to PCAs, it will Unfortunately. Metro Mobildraw more of the people now ity is too often inefficient and working as aides in hospitals, riders are not treated like renursing homes and hospices spected customers. People and couldexacerbatetheir per- continueto complainabout trip sonnel shortage throughout denialsand long waits forrides. the state. To prevent this, 1 believe the state needs to do Recently I heard about a more advertising for PCAs woman who has a good job at throughout the state and even a Minneapolis-based comin other areas of the country pany. Last summer she had an where unemployment is still accident,nowsheusesawheel-

on welfare. The pay is higher than the minimum wage positions many are now currently seeking, the emotional feedback is high and it could lead many individuals into careers healthcare field.

reasonably priced hou available, then no additi personnel will be found. pay scale is only part of issue, we need to addressall

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METROPOIJTAN CENTER FOR INDEPENDENT LIVING

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She willlose Her job dthout ' transportation. This is unacceptable.

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As 'governor, I will seek the advice of Metro Mobility riders. I will make sure that the .

FAMILIES AND FRIENDS, SERVICE PROVIDERS, AND INTERESTED COMMUNITY MEMBERS IN THE SEVEN-COUNTY METRO AREA.

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'The Legend of Sleepy Hollow" Cross Community Players, L a d of Life

h d k 612-603-2039) @ Advocacy IndependentLiving Skills Tr*iaing InQioidndPeer Sapport Deaf LL. Services

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* 1111Sunday, 2:OOp.m.

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sion of need would be between the patient and doctor.

There would be a state minim w floorforPC& based on - p& capita'-spending county b bv countv. 4-, .

'The Miracle W a r k d Child's Play Theater, Hopkins Commttnity Center

MCIL OFFERS SERVICES FOR PEOPLE WITH DISABILITIES, THEIR

Support Groups... c u m & :

We would create a committee of disabled people within the Metropolitan Council to set the course for how Metro Mobility can be more responQ2: If elected, what would sive to the needs of the comyou do to improve munity it serves. thePCA situation?

Policy goals for the service Personal Care Assistants offer would: people with disabilities the Create aquicker more accuopportunity to live in their own rate service that is as availhomes, where they can live as able as a bus or a taxi. independently as possible and Purchase more vehicles and be in controlof their own lives. hire needed drivers, paying It is unconscionable that them a living wage. people are being forced out of Funding for and making the n and back into MTC more responsive to their ~ w homes nursing homes because PCA people with disabilities. services are not available.

42: If elected, what would As governor, I pledge to begin you do to improve addressing this problem thePCA situation? immediately. But first I will gather firsthand information We want to give disabled from thosemost affected. I will people full dignity by stayworkto ensurethat MNmoves ing in the home, maintaining forward into the 21n Century their independence. by unleashing the human poThe Department of Human tential of every person. In my Services would pay living vision of the future, every perwage jobs with benefits to son wili have the opportunity Personal Care Attendants to work at a goodjob, live in a based on per capita spenddecent home, and be treated ing county by county. with dignity and respect.

We would recruit PCA workers withincentives formedi-

* 1Ol25Sunday,2:a)p.m.

fP +"a,U+%F

.

Information and R e f e d

Transportation Service board are actually users of the system. I will work to increase Metro Mobility's capacity by ensuring that it is efficiently and properly funded.

GuthrieTheter.

Minn~apolis

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"Mighty Missi, 'sippi: Tb Great River Race7" Steppingstone Theater St. P a l

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T t ' s .&p over eeight years was complete y stoned every Asince-'president George .time he came to work, and ap BushsignediritolawWAmerl: 'pard to be incompetent to cans with Disabilities Act .bsuot, the beleaguered boss (AD-A). This landmark civil- couldn't firehim beause "the rights legisl@tion,modeled af- government" (read; the ADA) '"terthe~ivilkights~ctof 1964, wouldn't let him. Do thewritis aimed a t i e m ~ v i n ~ , @ ~ ~ers - .think ; that supporters of the ers thatmake it difficultbr fm- ADA intend for a bunch of possible fsr $eople with $is.- activedrugaddicts and incom~abiIitiesti3participateinAmd~petents to be protected by feda n life. Whocould arguewith eral law? Not only is that i&a ,.-<thafnoblagaal? It seems that, outrageous in itself, but it's F-many-peoplecould, and their also based on incorrect inforattacks on the ADA can be mation. The actual text of the heard and seen wherever you ADA includes the following: look. What is the nature of- "...the term 'individual with a these attackson the aDA,md disability' does not include an when do may onne fmm? individual W ~ Ois currently engaging the illegal use of

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nancewilhpe6plewhoiha 2 or could, be allies.

l'hireis a secondaspect to the "Good Law GoneBad" attack that is pdcularly dangerous.

If the public fails to see the ADA as an expression of the legitimatecivil rights of an important segment of the society, and instead sees it as yet another example of Big Government run amok, then the stage is set for a public backla& agaipst the law. Sincethe ADA is so closely associated with the strugglefor disability rights, such a baccould evolveintoageneralimibacklash against .Uaspects o f h t struggle. The parallels with the battle over "welfare as we This was the: W l i n e of an Thi "disabling America" h o w it" are clear.

-81' .nicle in ~ o r b emaiiuine s re- genre inclwim c1PMs that the ess than 69days after anPcllca pointedout -;w- cently, d i s an e x a m I ? ADA is thra&hing s a y in Writer nouncing it was suspend6, "Isn'tfbb~;razy?"attaCkf~rm. ,thew--. h thisv*,we in The Humanist m ~ in ingoperadom, d DmGnethw ere's the basic approach: dig hear hat employers are being 1996that, although olher ma- EWmed its refurbkw corn, upsomeexamples ofmay law--. M B Z by Y 'the f d ADA to retain ior civil-rights legisbion is ~ ~ r p l ~ n t ~ w L.-,. . suits or regulat~lyefforts workers who are somehow currently seen as politically con(iningits reGg&tion

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make up the largest minority group in the Nation?: -

Undoubtedly a few of them were frivolous, but that's hardly the fault of the ADA. Frivolous suits are sometimes filed under the First Amendmenttotheconstitutionaswell, but calls for abolishing it are - rarelyheard. , -

-tional Review magazine. Icall this category of attack "They're ruining it for everyone." Also known as "What do they want from us?" It's a broad categoFy, but the argument is summed up well by Walter Olson, the author of a book called "The Excuse Factory," who says that "ADA has the potential b farce the

website is only one of many in this category, whichJ call the "Good Law Gone B e approach. (That same headline also appeared on a Reader's DigestarticleabouttheADA.) Thisstyleof attackisabitmore sophiJtieafcdywith a Of condescending sympathy for the "cause" of "the disabled." ~ wwe. Rave the articles that lament how such good-hearted people as those whodraftedfheADAcouldbe so naive or tbick-headed as to thinkthatafastatutecould cause anything but problems.

phone calls to the television station, speaking up at h e meeting, orwheseves~o~ms Three major types of attack h a w b e e n i d e n t i f d b . Perhaps you will seeothers. The important thing is that we all a*lutenvre'vesWhat we have and the threats to it, m&up~urmh&~dosomemg,and johr w u otbrs to make a d i i ~ n c e .Educate, organize, agitate.

Future generations may look

back on the passage 'of the Americans with Disabilities ~ castasmall stepin ap&s This is a more sophisticated of fundamental change in the attack for a couple of reasons. livesandcultureofpeoplewith One is k t there is some truth disabititiesintheUnitedSg&s. to thecharge that afederal law Or @aps it will be rememby itselfis not worth the paper bere$ as the bigh point of s rethinking-andwateringdown it's printed on. No matter noble but losing fight. If Mr. .of every imaginablestandard what the law says, if the soci- P e l h is right, and the rights of of comperenee, whether of eQ in which the law exists is peopiewithdiSabilidesarethe mind, body, or character" in largely ignarant of or pmju- most politidly l v u l d k of theU.SA. HopefirllyMr.Olson diced against the legitimate. anyme's right now, then disismoreextremethanmost,but needs and desires of people ability rights activists t d y variatim on this theme do with disabilities, or any other have -their work cut out for seem t o a p p e a r ~ d y r e ~group y that law won't be en- them. l in the mainstream media fa& (Manydisability-rights activists say that &is is what JeffI v y Natiofial ~ WritFor example, last spring tinis we are seeing right now with ers union; social .%c~(rity writer sawa p o p u l a r ~ ~ s i k o mthe ADA.) So an attack wsbg P w op? Mn, Box 14354, in which the benevolent boss the them of wsis B law that Minrturlpolis, MNSSS~. V O h i a major dnrg rrser. Dc- is trying to do something that 612-33ZWVQ Fa' 651444sDitcthefacthtthisemolo~ee it cannot do" has some re9o- 2136 wren@wmeredwt

The last day to register to vote before election day is October 15.

If you haven't registered before election day, go to your polling bring proof of address forwhere you are place on November 3 living on election day. The following are acceptableforms of prooE Minnesota Driver's License, harner Permit or I Dcard; someone who is registered at the precinct where you live who can vouch for you at the polling place; a school fee statement with your address In the preiinct &ng with a photo ID; or a student ID card with your address on it.

Election Day is November 3!

I ~

Justin Dart, Godfather of the Americans with Disabilities Act says: This is your life, your responsibility as a citizen of the United States -

Get involved in politics a s if your life depends upon it, because it does!

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October 10, 1998

Disability Culture

Crip Caste -Owning Up To The Pecking Order And Prejudice Within The Disability Community

by Victoria Medleys Culture Editor Lolly Lijewski's Note: The following article is the first half of a longerarticleby Medleys. The second half will be published in this column in November. I welcome your comments and ideas about this topic.

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hat's"better?'Apump ing para-body or one that's' cerebral-palsy spastic?

Skin that's light black or dark black?

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What's "better?" facial deformity or a missing limb? A fat, soft body or a trim, hard one?

What's "better?' A mindtagged mentally retarded or one labeled gifted? A hook nose or one that's small and "refined?"

What's usually a given is this: Humanjudgments concerning what'shotandwhat'sndcross all racial, economic, gender, religious,age and ability lines.

-. 2'

What's a little harder to get people to admit, let alone rpubEi%.iis great un"speken - sea of discriminatiin -the internalized ranking found within each human subgroup, disability included - that often keeps the house divided as much as or more than any external political, historical or economic Now in his &s, Milam -the forces. author of Crip Zen, The After all, most of us aren't Cripple Liberation Front comfortable admitting that Marching Band Blues andThe - =-;*we frequently rate ourselves Blob That Ate Oaxaca, as some way over other human well as dozens of other books eings. You know, the kind of and articles on sex, disability smug assessment one makes and small "p" politics -takes while standing in line at the on controversial subjects the grocery store eyeing that way a matador takes on a bull.

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much-fatter-person-withthe-Oreos-in-his-cart.

As a thinker, he seems to have few boundaries. As a writer, Or the calculated once-over no topic is too sacrosanct for given to fellowjob applicants disclosure or comment. As a knowing full well -all other humorist, he jokes that he's things being reasonably equal now a member of the "geezer -themostattractivelynormal caste." But as a man, Milam person will probably get the held tight to his secret sense of job, especially if it's not one superiority for 15 years after covered by affirmativeaction. becoming disabled by polio in his late teens; held tight to his It's the same king-of-the-hill "g1amourboy"post-polioidenbehavior kids with subtle tity, a condition President disabilitiessometimes indulge Franklin Roosevelt had given in when they come up against a certain social cachet. another "special" kid, maybe thk one who drools over the From the beginning, Milam's front of her shirt. The one they status taught him about the call "retard" at lunch. "entitlement" of those who inhabit the top tier; it taught It's also the kind of nasty pri- him the value of being-or at vate ranking afriendand1took least pretending to be -"betto extremes when we played a ter than" all others whose disgame of politically incorrect ability was more apparent or truth or dare: "Would you "less noble." rather have acid thrown in your face or have to use a wheel- But once he reached his 30s chair?' We took the wheel- and the effects of post-polio chair. As women, we knew the syndrometook hold, that same gender score. With a chair, top-tier position brought him we'dstillrank. to his emotional knees and to terns with what his privilege cost both personally and pois equal within the disability litically. He says today with cokpunia. reluctant but se&ng honesty, .Is#, 'What all that privilegemeant Crip Zen Revisited was intolerable suffering for others, so I didn't have to acAt his best, Lorenm Milam is a knowledge those parts of mywriter with atrue gonzo spirit. self of which1am most afraid."

e,

T h r e are more: thaiz IQ,ODQ numbered graves S R Mi rtnetsoto.

Milam says years of therapy and personal exploration have allowedhim to be more accepting of those very human thoughts,and to claim his place in the disability community.

Finally, Milam says, he can relate to others whose condition is seen by both disabled and nondisabledpeople as less acceptable.

plating the subject of caste, especially when he considers the pain such disclosurecould bring to some of his friends.

Progress aside, Milam says he occasionally catches himself automaticallysizing-up others, then silently calculating how theirpublic behaviormightreflect on him.

Gallagher. He says his acceptance level has evolved over the last 45 years as he adjusted - like his long-time friend Lorenzo Milam -to the realities of post-polio and life in a wheelchair. Gallagher admits that until 10 years ago he felt uncomfortable with, and often went out of his way to avoid, people withdisabilities dissimi"Being honest aboutthis makes lar to his own - especially me feel cruel, crass, moreinhu- those with cognitive disabiliman than I am. It makes me ties. sound as if I'm standingon the corpses of the lower caste." "As I've come to know people Forty-five years into his dis- from differentstrainsofdisabiliability, Milam says he's sur- ty, I'vegotten to know them as prised there's a subject left people and not as labels," he says. "We are a disparate that can make him flinch. group that comes in all shapes

By Trust Betrayed and sizes, but, based on my own education and evolution, Hugh Gallagher is no stranger I'd sayI'm optimisticthat many to the cost of crip caste as of these artificial boundaries defined by the nondisabled are disappearing." world.

Editors on Caste As the author ofBy Trust Betrayed: Patients, Physicians "If someone denies the existand the License to Kill in ence of a caste system within the Third Reich, Gallagher the disability community," chronicled the extermination says Lucy Gwin, "they're flat ofthedisabledby Hitler's medi- out lying." cal henchmen. With chilling clarity, he told the story of As editor of "Mouth," the German physicians who pro- less-than-timid Rochester, vided "final medial assistance" N.Y.-based magazine, Gwin to anyone they deemed says readers regularly com"unworthy of life." ment on the publication's cross-disability perspective Yet Gallagher,also the author and the feedback's not always of FDR's Splendid Decep- positive. "I hear it all the time: tion and the in-press Black 'I'mnotlike them. Why areyou Bird Fly Away, is less sure saying I'm like them?' We're about the existence of a caste all trying to stay on top of our system within the disability own little pile, but until all of us community today. "If there is get and give respect, none of an internal caste system, it us will get any," Gwin says. doesn't leap forward at me," he "This internal caste system is says. "That's one of the things so deeply ingrained in all of us that attracted me to the disabil- that we'll go to any length to ityrightsmovement.I seemost insist we're not retarded, we're people working together." not crazy, we don't drool."

Even so, Milam admits he isn't entirely comfortable contem- It wasn't always so for Gwin's assessmentof the cost of such polarization?

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"Everydung. We've been colonized by the charities, colonized by the agencies, colonized by our own behavior.

How f-ing stupid. How fing stupid that we buy into it."

Gwin admits her own bigotry occasionally gets her into trouble and, when she manages to catch herself in the act, she says the behavior out loud.

"Just bringing your own personal prejudice to light helps deal with it. As for our magazine, I know the fact that we don't deal with specific information on specific disabilities cuts into our circulation.

'Too bad," she says. "'Mouth'

is about changing the world, and this internal ranking is part ofall that, whether we like it or not."

I

Although somewhat less vehement in his approach, William G. Stothers, editor of the San Diego-based magazine "Mainstream," echoes Gwin's basic philosophy.

I

"From a collective view, I'd sav this internal ranking" has denied us unity, power and influence," says Stothers.

"Fromapersonal point of view, it diminishes our own possibilities. From adisability press point of view, it probably costs us in terms of circulation and advertisers in so far as we don't cover other groups."

Stothers says he remembers learning thepower of cripcaste from early on. 'When I w k a kid at camp, I was definitelyin a higher caste and I subconsciously exercised that power against others. When I was backin thenondisabledvBo$if, I was once again on the low

I

"Unfortunately, we do to &&9 ers who share our condition of disability what we complain others do to us," says Stothers.

"We in the disability press rationalizenot dealingwith these issues, but we have to challenge ourselves. At somepoipt, it means you have to deal orcith your own discomfort."

*up:

Whether people are dealing with their discomfort or simply learning to be more sensitive to the political climateis amatterof conjecturefor writerMary Johnson. Editor of "The Disability Rag" for 15 years and now editor of its reincarnation, 'The Ragged Edge." Johnson says she's seen a change over the past 10 years. Before that, people with physical disabilities didn't hesitate to voice their displeasure at being in any way connected to people with cognitivedisabilities.It's not something she hears so much today.

"Idon'treally know what [they] think inside, but my sense is that, within the disabilitycommunity at large, there is alittle tiny, tiny bit more solidarity," says Johnson. "At least most are willing to admit that the problem of ranking exists.".

"Crip Cask: Owning Up to the Pecking Order and Prejudice Within the Disability Community" orginally appeared in "New Mobility" ma~mine.

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