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  • 7/31/2019 11 2011 Ability Magazine Quincy Jones and Michelle Whitten

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    QUIN

    CY

    JONES

    OCT/NOV

    2011

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    ABILITY 51

    The ABILITY Build program

    outreaches to volunteerswith disabilities to help build

    accessible homes for low

    income families. We are cur-

    rently seeking corporations,

    organizations and churches

    to sponsor more homes. This

    award-winning program

    builds homes and aware-

    ness, changing the lives of

    everyone involved.

    abilitybuild.org

    [email protected]

    http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/http://abilityawareness.org/
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    MANAGING EDITORGillian Friedman, MD

    MANAGING HEALTH EDITORE. Thomas Chappell, MD

    EDITORIAL DEVELOPMENT DIR .Pamela K. Johnson

    CONTRIBUTING SENATORU.S. Sen. Tom Harkin (D-IA)

    HUMOR WRITERSJeff CharleboisGeorge Covington, JDGene Feldman, JD

    EDITORSDahvi FischerRenne GardnerRegina HallMolly MackinJosh PateDavid RadcliffDenise Riccobon, RNJane Wollman RusoffMaya Sabatello, PhD, JD

    Romney Snyder

    HEALTH EDITORSMoses deGraft-Johnson, MDLarry Goldstein, MD

    CONTRIBUTING WRITERSAshley FiolekGale Kamen, PhDLaurance Johnston, PhDAndrea KardonskyDeborah MaxMyles Mellor - Crossword PuzzlePaula Pearlman, JDAllen RuckerKristen McCarthy ThomasBetsy Valnes

    WEB EDITORSStan HoskinsMary Shafizadeh

    GRAPHIC ART/ILLUSTRATIONScott JohnsonMelissa Murphy - Medical Illustration

    PHOTOGRAPHYNancy VillereCrushPhotoStudios.comQuincy Jones

    TRANSCRIPTIONISTSandy Grabowski

    The views expressed in this issue maynot be those of ABILITY Magazine

    Library of CongressWashington D.C. ISSN 1062-5321

    Copyright 2011 ABILITY Magazine

    DIRECTOR OF BUSINESS AFFAIRSRyan Brown, JD

    MARKETING/PROMOTIONSAlejandra DelaporteStan HoskinsAndrew Spielberg

    ABILITYJOBS.COMCasey Mims

    [email protected]

    NON-PROFITSABILITY Awareness

    PUBLISHER/EDITOR-IN-CHIEF

    Chet Cooper

    6 HUMOR THERAPY Coupons Are For Suckers

    8 ASHLEY FIOLEK 2011 Womens Motocross Champ!

    10 SEN. TOM HARKIN Working For More Jobs

    12 CINDERELLA A New Spin on an Old Tale

    14 STILL SWINGING An Inside Look at Adaptive Golf

    18 SUSANNEBRUYRE, PHD Creating Possibilities at Cornell

    22 VIRGINIA JACKO, CEO Blind Visionary

    26 MEET THE BIZ Actors Training Actors

    30 PAWS/LA The Sick and Elderlys Best Friend

    32 QUINCY JONES Renaissance Man and More

    44 GLOBAL DOWN SYNDROME Things Are Looking Up

    52 WORKOUT DVD First You Get Off The Couch...

    54 THE OLD GUARD A Change is Gonna Come

    56 OCD From Pain to Published Author

    60 ABILITY CROSSWORD PUZZLE

    64 EVENTS & CONFERENCES

    ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646(ISSN 1062-5321) All Rights Reserved.

    Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices.POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager,

    PO Box 10878, Costa Mesa, CA 92627; Quincy Jones Oct/Nov - 2011

    Printed in U.S.A.

    C

    O

    N

    T

    E

    N

    T

    S

    ADVERTISINGFor advertising

    information e [email protected]

    or call949.854-8700 ext 306

    DISTRIBUTIONWarner Publishing ServicesA Time-Warner CompanyFaxon - RoweCom Library

    ServicesEbsco - Library Services

    Swets Blackwell

    CORPORATE SHIPPING8941 Atlanta Ave.

    Huntington Beach, CA 92627Tel 949.854.8700TTY 949.548.5157Fax 949.548.5966

    ParalympicGamesBeijing

    MusicWithin

    ABILITYsCrosswordPuzzle

    Quincy Jones p. 32

    Zimmerman p. 26

    Fore p. 14

    Ashley Fiolek p. 8

    Paws p. 30

    ABI LITYMAGAZINE.COM

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    32 ABILITY

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    ABILITY 33

    uincy Jones music-industry reign spans more than sixdecades. Hes taken home a phenomenal 27 Grammy

    Awards, and found winning formulas for the likes of MichaelJackson, Frank Sinatra and Barbra Streisand. A major multi-media presence, he produced TVs The Fresh Prince of Bel-

    Air, created Vibe magazine, and co-produced the movie TheColor Purple with director Steven Spielberg. Topping offhis voluminous achievements are a Kennedy Center Honor,the French Lgion dHonneur and seven Academy Awardsnominations.

    When Jones met John Sie, founder of Starz EntertainmentGroup, the two became fast friends. Today they worktogether in advancing a number of pet projects, includingthe Global Down Syndrome Foundation, the founding ofwhich was inspired by Sies granddaughter, Sophia, who hasDown syndrome.

    In 2009, GDSF created the Quincy Jones Exceptional Advoca-cy Award in recognition of the musicians prodigious philan-thropy. As the producer behind two We Are the Worldrecord-ings, he played an integral role in raising financial support for

    famine relief in Africa in 1985, and aid to those affected bythe Haitian earthquake in 2010.

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    34 ABILITY

    ABILITYs Chet Cooper caught up with Jones in LosAngeles.

    Cooper: How did you get involved with the GlobalDown Syndrome Foundation (GDSF)?

    Jones: John Sie is an old friend of mine. Hes a pioneerof cable television, high-definition television and a rangeof technology. He knows his business backwards andforwards. So we were kicking around the idea of launch-ing a black-oriented entertainment network, because Iwanted to see one thats more useful to the black com-munity than what is being offered today. Eddie Murphy,Denzel Washington and Will Smith were going to come

    together on it with me. We decided to put that project onhold for a while, ultimately, but John and I becamefriends forever. He truly is my brother from anothermother.

    Cooper: Do you think you might still pursue the cre-ation of that network?

    Jones: Absolutely. We recently met with AT&T, TNT,DirecTV and Comcast. Its exciting. It gets me out ofbed in the morning.

    Cooper: As your friendship with John evolved, he calledyou up and said,I have an idea for a nonprofit. Is thathow it happened?

    Jones: Absolutely. I took a trip to Denver, where I metbeautiful little Sophie, his granddaughter, and it was

    love from then on.

    Cooper: Lets talk about the Linda Crnic Institute.

    Jones: The people there are doing great work. Theyreso passionate about the mission, and John is totallycommitted to it.

    Cooper: Other than Sophia, have you met many chil-dren with Down syndrome?

    Jones: Throughout my life: A lot of celebrities have kids

    with Down syndrome. For the last two years, Ive beenworking with Jamie Foxx, whose sister, DeOndra, hasDown syndrome. He brought her in to do our Be Beautiful,Be Yourself fashion show, and she said, Im the star!

    Youd think all these kids on the runway would be shy,but theyre strutting like Naomi Campbell and ChristyTurlington, you know? One time they had me on thedance floor, and they almost put me in the hospital.(laughs) I just love them, man! These kids are so smartand so emotional.

    Cooper: So many of us are guarded in what we say andin showing how we feel. The people I know with Downsyndrome seem to be more honest and sincere.

    DeOndra Dixon, Jones, Anna and John Sie,and Deondres big brother, Jamie Foxx.

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    ABILITY 35

    Jones: Absolutely. Sincerity flows out of them. Every timeIm with the kids, they want to feel my hair. I had twobrain operations for an aneurysm, and they get curious.

    Cooper: Can we talk a little bit about your aneurysm?

    Jones: Its a weakness in the main artery to the brain, acongenital weakness, and it hit me like a ton of bricks. I

    was in a coma. I didnt know what had happened until Icame out of it. My head was all wrapped up. Doctorshad drilled a hole in my head and sawed out a piece ofbone. They told me, The good news is, you lived. Thebad news is, youve got another one, and weve got togo back in.

    Man, I lost it! (laughs) When they operated on meagain, two months later, I became paralyzed on my leftside. My doctor said, Get your butt on that road, oryoull be a vegetable the rest of your life. My bandhad a 15-day tour in America, and a 15-day tour inJapan the following year, so I went out on the road.

    She was right: When I finished the tour, I wasnt para-lyzed any more.

    Cooper: That was your physical therapy?

    Jones: Exactly! Shakin my booty! [laughter] It wasgreat, man! It makes you appreciate life more, Ill tellyou that.

    Cooper: Teri Garr had an aneurysm, too.

    Jones: A couple of actresses have had it. Its no joke.

    Cooper: I was at her house for an interview, and shewouldnt come downstairs. Her daughter thought it wasstrange that her mother was still in bed. She realizedsomething must be wrong. Turned out Teri was having ananeurysm.

    Jones: Oh, my God, man! While you were there?

    Cooper: Yes.

    Jones: You dont know what it is, at first.

    Cooper: Her daughter thought she was just tired.

    Jones: When it happened to me, I blacked out all of asudden. I looked at the television and suddenly I haddouble vision. It felt like a shotgun had been fired intomy brain. I went in and out of a coma because of thepain, I guess. Its amazing. I didnt know my own chil-drens names, or even my own name. My daughter was

    just six months old.

    Ive been working with a doctor in Stockholm for thelast five years. There are also 14 doctors I see, once ayear, over the course of six days. They get together to

    compare findings. They share information with meabout the coming nanotechnology, which they say willbe a billion times faster than this dinosaur stuff wereusing now. I hear them talking about the paradigmshifts that will happen as a result of these innovations.Itll shake the world to the ground.

    Cooper: Do you have any heart problems?

    Jones: Oh, no. Ive got a heart like a mule. Like a Viking.My daddy was half Welsh, and boy, that global gumbois very strong.

    Cooper: Lets talk a bit about the global gumbo that ismusic. Its interesting to me that its both artistic andmathematical. Do you ever think of music in terms ofwavelengths?

    Jones: Are you kidding, man? Ive thought about it thatway for most of my life. For one thing, symphonyorchestras tune up to A, right? Thats 440 cycles. Itsnot an accident that the universe is 450 cycles.

    I traveled with Nat King Cole in the early 60s. Hed do averse ofAutumn Leaves, a capella, and then the orchestrawould come in under himand the orchestra was out oftune because Nat King Cole had perfect pitch. Mathemat-ics and music are absolutesbrothers of a sort.

    Music always engages the left and right sides of thebrain. Youve got emotion and intellect at work at alltimes, and that makes it easy to learn everything else.Im a strong advocate of having music connected to

    your life. Itll turn you upside-down. I see people withdyslexia and attention deficit disorder (ADD) benefitingfrom it.

    Cooper: We actually are working on a music-therapyprogram.

    Jones: Its powerful, man.

    Cooper: Weve written what we call The ABILITYSong (Everyone Be Beautiful). Anyone can join in thesong by playing the kazoo, because if you can breathe,

    you can play kazoo.

    Jones: Did you write the song?

    Cooper: It was a co-production between Molly, an edi-tor whos on sabbatical now, and myself. Shes a won-derful singer and an incredibly talented writer.

    Jones: Id love to hear that; I could make it an anthem.(laughs) And everybody can play a kazoo.

    Cooper: Its amazing how many people with disabilitiesare involved in music.

    Jones: Look at Albert Einstein. He had ADD, he was

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    36 ABILITY

    dyslexic, and he dropped out of school. He also playedviolin. (laughs) He and I have the same birthday, so I

    paid a lot of attention to him. Did you take algebra?

    Cooper: Yes.

    Jones: Pi is 3.14, right? Thats my birthday and thebirthday of actor Michael Caine, too. We were born inthe same year, month, day and hour. Its like weretwins.

    Cooper: Youre all part of the same pie?

    Jones: Oh, yeah. (laughs) Exactly. We fell out of the pie.

    Cooper: What youre describing sounds something likeastrology.

    Jones: Yes. I didnt get into that stuff until I met astro-naut John Glenn, whom Ive now known for about 25years. He was one of the first in space in the 60s, andhe taught me a lot about gravity. We think weregrounded, but were not grounded. Were living on aball of infinity. Its Earths 360-degree revolution, 24-7.

    Cooper: Yes, most people havent thought of it that way.

    Jones: Yes, sir. At the 50th anniversary of the Ameri-can space program last year, I presented platinum

    copies ofFly Me to the Moon to astronauts Neil Arm-strong and John Glenn. I had arranged the song for

    Sinatra in the early 60s, and astronauts from the Apol-lo 10 and 11 missions played it while they were upthere. For the 50th gala, I directed a special perfor-mance of the song by Frank Sinatra, Jr., and a 100-member orchestra.

    Cooper: Have you actually witnessed a launch?

    Jones: Ive seen a couple of them. Theyre amazing andterrifying. Those shuttles make a lot of noise.

    Cooper: You can feel the soundwaves ripple inside your

    body.

    Jones: Yes. Those take-offs, with all that equipment,knock things down. You know, my friend, the late astro-naut Ronald McNair, played alto sax. He was on theSpace Shuttle Challenger when it exploded.

    Cooper: There are some young people who may notknow as much about your background. Can we go into ita little bit?

    Jones: Youve got some time? (laughs)

    Cooper: Hmm.... (looking at his wrist - no watch)

    Above: A US delegation, whichincludes Jones, visits Nelson Mandelain South Africa. Below, Jones testifiesbefore a Senate subcomittee.

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    ABILITY 37

    Jones: (laughs) You cant imagine how blessed Ivebeen. I was playing with Billie Holiday, Billy Eckstine,

    Cab Calloway, and all those guys when I was 14 yearsold. And then, later, I worked with Ella Fitzgerald andSarah Vaughan. I was with Count Basie for almost 25years. Frank Sinatra, Ray Charles, Aretha Franklin, youname em, man.

    We did the first record with Big Maybelle,A WholeLotta Shakin Goin On. Years later, when Jerry LeeLewis did it, he became a legend.

    I saw when the white community started to get hip toblack music in 54, and it became an emotional revolution.

    The same thing happened with The Beatles in England in64. The English really knew what they were doing. I sawthem putting The Rolling Stones together, and Id justdone Lesley GoresIts My Party. People told me, Youdont have to do rock n roll, and I said, You wannabet? We had 18 hits with Lesley. It was a great time.

    Cooper: One of the first interviews that this magazineput online was a conversation with Ray Charles.

    Jones: Ray and I came up together in Seattle. We met in1948 and spent the rest of our lives together. We wereteenagers when we did bar mitzvahs and schottisches.We played with marching bands and street musicians.

    He came from Florida, and he could see until he wassix. He told me that he was in a foster home, got chick-

    en pox, and went to a white hospital where they would-nt let him in. He said that by the time he made it overto the black hospital, he was already blind.

    Cooper: Your early years with Ray and others seemed tofocus on jazz.

    Jones: A lot of guys said I sold out jazz when I pro-duced Michael. I said, Youve got to be kidding, man!The way I see it, you just use your skills and dont loseyour integrity. Thats very important.

    Cooper: Youve done so much more than music

    Jones: Ive done 40 movies.In Cold Bloodwas the first.And we discovered Oprah with The Color Purple, andthen Will Smith with The Fresh Prince of Bel-Air, backwhen he was a rapper. He may be the biggest star in theworld now.

    When you take a step in defeat or retreat, and you getcautious and reticent, it doesnt serve you. You cant getan A if youre afraid of getting an F. So when youtake a giant step towards victory, even if you fall down,get right back up, and hit it again.

    Im at the point now where nothing scares me.Nothing!

    Jones astute and timelessproducing skills in the studioled to his composition ofcountless film and moviescores, 27 Grammys andseveral Oscar nods.

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    38 ABILITY

    If I dont go through the front door, Ill get in through theback window. Being underestimated is so powerful.

    Cooper: But people are more likely to overestimate you,because youve been so successful.

    Jones: Sometimes I get crazy dreams and wonderwhether I can pull something off. In my commencementspeeches, I tell kids, Make your dreams so big that ifyou only achieve half of what youre after, youre stillin good shape. If you can see it, you can be it. Thatswhat I love about John Sies kids. Theyre so sweet.

    I believe childrens rights are a global issue. In AngkorWat, Cambodia, there are 10 million landmines left

    over from the Vietnam War. So many kids have hadtheir legs blown off. Same thing happens in Colombia.Its crazy. Weve got two hospitals in Angkor Wat, andIve adopted some families over there.

    Cooper: I know youre involved in some work in theMiddle East, as well.

    Jones: We went to Iraq in 2003 to help escort 200 kidsto a childrens hospital in Washington. We left ourAmerican plane in Jordan and were given a NewZealand plane to use. We even wore bulletproof vests,and descended straight down like we were going tocrash, to avoid rocket-propelled grenades as we landedin Baghdad. It was an astounding trip because this area

    was once known as Mesopotamia, the Tigris, and theEuphratesnames straight out of history. It just blowsmy mind that this kind of destructive stuff is happen-

    ing in such historic places.

    Shortly after the earthquake in Haiti, we provided human-itarian aid by donating the proceeds of a second recordingofWe are the World. We are currently developing a trans-parent accounting system to show where every cent of theproceeds go. A lot of big organizations spend upwards of50 percent of their received donations on overhead. Icant stand that, but I wont call out any names.

    Cooper: Their initials are

    Jones: (laughs) It drives me crazy. I travel all over theworld. We just got back from Korea, Seoul, Beijing,Shanghai, Morocco, Sardinia.

    Were working a lot with Paul Kagame, the president ofRwanda. Hes an amazing guy. Ive also been workingwith Nelson Mandela for 45 years.

    Cooper: So much world, so little time.

    Jones: (laughs) I know. Were doing a film in Brazil,and were taking along musicians from Mississippi andLouisiana who were affected by Katrina. Thats why Im

    just so passionate about what John is doing with GlobalDown Syndrome Foundation: Hes addressing something

    Above: The late Ray Charles andJones were friends from their teenageyears. Inset: Michael Jackson, StevenSpielberg and Jones collaborate onthe film ET The Extra Terrestrial.

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    http://aboutthewalkingpill.com/
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    http://ampyra.com/
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    ABILITY 41

    thats close to him and impacts so many others. Thatswhat it takes: passion, knowledgehes got it all.

    John knows how to put that left and right brain togetherand get them both going. Hes fueled by emotion, butalso has an understanding of science. Were both learn-ing everything we can about Down syndrome, and abouteradicating the medical and cognitive effects associatedwith trisomy 21the chromosome thats associated

    with causing Down syndromethrough scientificbreakthroughs.

    This kind of work is a lot like putting together a sympho-ny orchestra. You have to get the right people in theroom: four trombones, four trumpets, five saxophones, aguy who plays piano, guitar, bass, strings, percussion.(laughs) When youre trying to get something going,people need to complement and support each other, yetstill maintain their individual strengths.

    Cooper: Do you see the quest for disability rights as ahuman-rights issue or a civil-rights issue?

    Jones: Its all the same to me. (laughs) Its humanity.

    People cant be responsible for their skin color, or whatcondition they were born with. They had nothing to dowith that.

    Cooper: Youre familiar with the r-word?

    Jones: Oh, yeah! Absolutely.

    Cooper: Do you remember the TV show Life Goes On?

    Jones: Do I remember it? (laughs) In 1991, I was in anepisode called Last Stand in Glen Brook. Chris Burkeplayed Charles Corky Thatcher.

    Cooper: I interviewed the actress Andrea Friedman,who played Corkys girlfriend on the show.

    Jones: No kidding? I mustve worked with her, then.Small world.

    Cooper: I asked Andrea, who has Down syndrome,what she thought of the r-word. Growing up, she hadher own strategy for dealing with it: She would tellkids, Quit bothering me, because Im gonna tell my

    Jones with studio musicians.Inset: the producer with thelate Sammy Davis, Jr., aphenomenal performer.

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    42 ABILITY

    sister. And then she would tell her sister, and her sis-ter would take care of them. [laughter]

    Jones: I love that.

    Cooper: Im always taken aback when I hear kids bullychildren with disabilities.

    Jones: Theres the same problem among adults. MarlonBrando called me 35 years ago and left me a message. Hehad seen some racism on a college campus, and his phonemessage was: I dont know what to do about it, man. Ifpeople were all the same color, the same hair, the sameblue eyes, it wouldnt be two minutes before the right-handed people would be kickin the s--t out of the left-handed people.

    Marlon was right. Its all the same. Its tribal. Yourenot like me, so Im gonna make you feel small so I canfeel like a giant. It makes me sick.

    Cooper: How do we reach out to these groups that needa shift in awareness? Thats always been the challenge.

    Jones: I think music accomplishes that better than any-thing on the planet. Its no accident that God only left 12musical notes for everyone in the world to share. Thatsa basic line of communication. You cant get away fromit. As soon as you hear music, whether its diatonic,pentatonic, chromaticyou can identify it in two sec-onds, anywhere in the world.

    I used to sit in Istanbul, in the Sophia mosque, all

    night and listen to guys sing a capella as all the quar-ter tones echoed off the marble. I told Malcolm Xabout it when he came back from Mecca, and hednoticed that same sense of unity were talking about.He said, Man, its not about race, its about belief!In Mecca, he saw blond-haired, blue-eyed people. Itshocked him. (laughs) In the United States, racismoften keeps us separated from one another.

    Cooper: Are you familiar with temperament theoryand the Meyers-Briggs personality test?

    Jones: Absolutely.

    Cooper: I think when we see people who are bigotedor racist or using the r-word, theyre coming from a

    place where that is the predominant way of thinking.The majority of people on the planet are sensory-based personalities. They arent comfortable withchange or with moving beyond their norm.

    Jones: I agree.

    Cooper: And the way you change the mindset of thosepeople who are not intuitive is to put them in situationsin which they can have a first-hand experience of dif-

    ferences. For instance, in Guess Whos Coming to

    Dinner, the father of the young white woman is a latentbigot, until he gets to know his daughters fianc anddiscovers the young man is of upstanding characterand principles.

    Jones: Exactly.

    Cooper: Im amazed by your ability to remember so

    many people and experiences.

    Jones: I think they cleaned all the cobwebs out whenthey went in for the brain aneurysm. (laughs) Before thesecond surgery, the doctors told me, Were going intowhere your memory and motor skills are. It was terri-fying because the pathways of the brain are so complexand interconnected.

    Cooper: I watched a relatively new procedure at theCleveland clinic in Ohio. Surgeons put a probe insidethe brain of a person with Parkinsons.

    Jones: Oh, my.

    Cooper: They had mapped the patients brain, andonce they turned on the electric stimulation, the shak-ing instantly went away. The procedure changed that

    persons life.

    Jones: Parkinsons. Thats what Muhammad Ali has,and now Glenn Campbell is dealing with Alzheimers.Its sad to see them go through such challenges.

    Cooper: Your life is full of enough material for several

    movies. What are you doing with your knowledge base?

    Jones: Using it, spreading it, sharing it with my kids.Im getting involved with diverse groups of people onan international basis. At this point, I feel at homeeverywhere in the world.

    Cooper: Do you continue to produce shows?

    Jones: Were doing nine movies right now. Were doingan IMAX movie about Katrina, and two movies aboutBrazilone on thefavelas (shanty towns) and the other

    about their Carnival celebration.

    Cooper: Nice.

    Jones: Carnival is amazing. I go to the one in Rio everyyear; its one of the biggest spectacles of all time. Themusic blows your mind. Ive never heard such goodmusic in my life. The lyrics are Portuguese, while therhythms have an African influence.

    Cooper: You no longer play an instrument, right?

    Jones: I play piano, but no more brass. Ive got my hornson the wall now, where I can look at them. I have DizzyGillespies trumpet, and Cannonball Adderleys flute.

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    Cooper: What about a kazoo?

    Jones: Ive got to get one of those. You ought to create abrand for that.

    Cooper: We thought about it. We found one placein the States and, of course, several places in Chinathat manufacture kazoos.

    Jones: Its a good idea. With the technology availablenow, you could do even more than just a kazoo sound.Weve been playing around with some guys whoinvented a thing that creates the sounds of strings, cel-los, woodwinds, percussion, timbales and all that stuff.You can play an orchestra with your fingers.

    Cooper: Have you heard Chris Burkes band?

    Jones: Yeah, they featured it onLife Goes On, I think.Ive got to go back and find my copies of that show.Musics ability to tap into our emotions and our intellectis powerful stuff. It can turn peoples lives around.

    Cooper: Just as youre doing.

    Jones: Oh, were having an absolute ball! Youll be hear-ing about our Middle East project soon. Its dedicated tothe Arab Spring. Its called Bokra, which means tomor-row in Arabic. Were doing it online, and its going to

    be unbelievable. See, the Middle East has got the revolu-tion going, but it doesnt have a plan. Most of the peopleI met out there said to me, Id rather die than live likewe were living. Its amazing how common that feelingis. Its all over the Middle East. Ive been going overthere for 50 to 60 years.

    Cooper: If it werent for the recent advancements intechnology, the uprisings wouldnt have been as widelyknown, or anywhere near as effective.

    Jones: Chinas scared to death of the Internet becauseyou cant control it. You cant control individualcommunication.

    Cooper: Whos going to make the movie of your life?

    Jones: I dont know. Weve got so much stuff goingon! I did a concert for Mandela in London, a few yearsago, when he was 90. Backstage, a guy came up andasked me to meet his daughter, Amy Winehouse. SherecordedIts My Party, on my last album. Twenty-seven and gone.

    Cooper: Ive interviewed a lot of people, politicians,celebrities, movers and shakers in the world. Ive nevertalked to anybody who has accomplished quite as much

    you have. And Ive met some really incredible people.You have to get somebody working on your movie.

    Jones: Weve been talking about it for a few years, andmy sister-in-law reminds me about it all the time. I feel

    like Im just getting started.

    Cooper: You should capture your story while youre stillso active and your mind is still so creative. You needsomebody to shadow you and jot down all those uniquemoments. Ive been trying to write books myself, and

    Ive told people around me, Ask me about Za ZaGabor, Bob Dole, ask me about Richard Pryor

    Jones: Richard was a maniac, but I loved him.

    Cooper: I only met him after he got multiple sclerosis.

    Jones: We had a lot of fun together. I saw him and BillCosby when they first started. Lennie Bruce and I usedto hang out together, too. Bruce was that same kind ofrevolutionary comic.

    Cooper: If I were in the film business Id want to workwith you and make this film.

    Jones: Chet, you never know what will happen.

    Cooper: I know youll keep going, right up until the end.

    Jones: Bop until you drop. (laughs)

    quincyjones.com

    Left: Frank Sinatra and Jones.Right: Willie Nelson, Jones andBruce Springsteen.

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    s executive director of the Global DownSyndrome Foundation (GDSF), Michelle Sie Whitten isdedicated to promoting research of a common birthdefect that has touched her family. She recently satdown withABILITYs David Radcliff to discuss theaims of her foundation, and the role Down syndromeplays in both her work and home lives.

    David Radcliff: How would you explain the work you doat the foundation?

    Michelle Sie Whitten: Were unique in our ability to filla void of information about Down syndrome. Historically,there have been good parent-outreach organizations, butthere hasnt been a nonprofit that specifically treatsresearch and medical care as core competencies. Peoplewith Down syndrome now live into their 60s, so theresa significant need to revisit the research and medical care.

    Radcliff: You got involved in this cause because itdirectly impacts someone in your family.

    Whitten: Thats almost always the case, isnt it?

    My first child was born with Down syndrome in 2003.

    At 19 weeks into my pregnancy, I got the terrible pre-

    natal diagnosis, and later I had the day-to-day experi-

    ence of raising a child with intellectual and develop-

    mental challenges. I set out trying to find whatever

    information was available. I wanted to learn how Icould give my daughter every opportunity.

    Radcliff: How much did you know about Down syn-

    drome before the diagnosis?

    Whitten: Nothing. In fact, I had never met anyone who

    had a disability. Looking back, I wonder whether that

    was because people with disabilities had been segregat-

    ed at the time, or because that was just a reality of

    where I went to school.

    From a young age, Ive been passionate about correctingdiscrimination and fighting inequality in areas of gender,

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    sexual orientation and cultural bias. Having a child with

    Down syndrome, in a strange way, expanded my interest

    in human and civil rights to an even greater degree.

    Radcliff: What would you hope to convey to other parents

    who have recently had a child with the condition?

    Whitten: I think the first thing to realize is that nobodycan tell you what your experience will be. And you wont

    know, until you go through it, how youll feel or function

    as a parent. By and large, people with Down syndrome

    are much more alike than they are different. But there are

    differences, especially in the first few years of life, that

    do need to be addressed with therapy and proper medical

    care.

    Radcliff: What are some of those early medical needs?

    Whitten: Approximately 50 percent of kids with Down

    syndrome are born with a congenital heart problem. Ifyour child falls into this category, youll want to make

    sure to get him or her properly examined. The good

    news is that 99 percent of these heart conditions can be

    successfully treated.

    Parents should also check out their childs hearing. Kids

    with Down syndrome can experience significant hearingloss or whats called blue ear, so its recommended that

    these kids get their hearing tested frequently. A failure topick up on a hearing problem in its early stages can affect

    the clarity of the childs speech or even his or her ability

    to speak.

    Radcliff: It could also inhibit socialization.

    Whitten: Exactly. So those are two examples of medical

    needs that parents should know about, and theres a

    whole list of topics available from the American Associa-

    tion of Pediatrics, and then a more detailed list offered by

    the Down Syndrome Medical Interest Research Group.

    At the Linda Crnic Institute for Down Syndrome in

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    Denver, were working on a wonderful toolkit ofinformation that well roll out to professionals. Thatway it wont be completely incumbent on parents tofigure out everything that is needed for a child.

    People with Down syndrome are more like us than theyare different, but they do have a unique set of challengesand a unique set of gifts. It is very important for a new

    parent to enjoy their baby, but also to address his or hermedical issues. Though parents might feel over-whelmed, finding the right nurse or doctor can set achild on a trajectory towards successfully reaching hisor her full potential.

    Radcliff: As is true in the process of raising any child,there are all kinds of factors that might come into the

    picture that parents cant foresee.

    Whitten: Exactly. In the case of my daughter, for exam-ple, we were told by certain professionals that kids withDown syndrome dont need speech therapy until theyrethree years old. Then, when our daughter was aboutthree, we discovered from another very reliable source,that youre generally supposed to start a child withDown syndrome on speech therapy at 18 months. Wefelt that we had lost out a little bit on our daughterstime and trajectory.

    Often parents of children with Down syndrome tell usof strange prescriptions a doctor or therapist has giventhem. Weve been quite surprised and, in some cases,shocked. For instance, some parents are instructed tohold their baby or feed the child a certain way that can

    actually be harmful. Unfortunately, consistent, up-to-date information about how to care for a child, an ado-lescent or an adult with Down syndrome doesnt exist.There were materials published in the 80s, but weredealing with a different reality today. The researchneeds to be updated and disseminated both to profes-sionals and to parents. Professionals are clearly not get-ting enough data.

    Radcliff: Do you think this lack of education has to dowith the notion that, for certain disabilities, the expecta-tions are already diminished?

    Whitten: I think some people, even from within themedical profession, feel a family that keeps a baby witha prenatal Down syndrome diagnosis should bear all theresponsibilities associated with the condition. Its as iftheyre saying: You made your bed. Now lie in it.With accurate information and research, more can be doneto improve the health, lifespan and even the cognitivefunctioning of people with Down syndrome.

    Since the human- and civil-rights movements of the60s and 70s, there has, thankfully, been a generationalshift as people have grown up alongside our childrenand have come to see them as people with dignity whodeserve rights and medical care.

    Radcliff: It sounds like your primary objective is to getinformation out to families.

    Whitten: Were here for the professionals as much as foranybody. Without funding for researchwhether itsresearch done by the National Institutes of Health or theState Department of Educationits very difficult for usto disseminate accurate information. So we take every

    piece of information that we have on Down syndrome,and attempt to reach valid and evidence-based conclu-sions that we can distribute to society, the press, parentsand professionals.

    There are people who say 50 percent of our childrenwill experience an early onset of Alzheimers disease intheir thirties and forties. There are some who say 100percent will experience this, and there are some who sayless. What is the reality? Clearly research could demys-tify this. The Down syndrome community currentlylacks patient registries, databases and biobanks thatwould aid in biological research.

    The benefit of being last to the table in this regard, isthat we can look at those facilities that already exist andadopt their best practices. We can really make sure weare protecting and empowering people with Down syn-drome and their families. Not all registries, databasesand biobanks do that. There are cases in which the sci-ence may eclipse the people being discussed, and wedrather not have that.

    Radcliff: What are some of the myths about Downsyndrome?

    Whitten: One of the most pervasive is that people whohave Down syndrome cant learn. You often hear,Well, you know, shell never get beyond the mentalability of a five-year-old or an eight-year-old.

    Radcliff: Thats right in line with diminished expectations.

    Whitten: Yes, it is. Sometimes the expectation is thatthis person shouldnt even be given the right to live.Families who institutionalized their children were told,Your kid is not going to be able to talk, read, walk or

    do any sports. Clearly all of those things were false,and its hard not to shed a river of tears for those whoare now gone. We cant get them back. And they wereso abused and so neglected during their life times. Eventoday, theres a residue of that experience, as well aslingering uncertainty about what people with Downsyndrome can actually accomplish.

    When we held the first-ever national poll on the topic ofhow mainstream Americans view people with Downsyndrome, we found the perception was overwhelminglypositive. I think thats a result of Ted Kennedy and TomHarkin, and all the people who really went to bat for theIndividuals with Disability Education Act and the Amer-icans with Disability Act. You see the fruits of their labor

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    in our poll today. More than 80 percent of Americansstrongly believe that people with Down syndrome havethe right to live independently, get married and have

    jobs. In the 1960s, people would have said that peoplewith Down syndrome should not be allowed in publicplaces. So weve witnessed a huge paradigm change.

    Radcliff: But I imagine theres still plenty of work to

    be done.

    Whitten: Absolutely. One of the questions in our pollwas: Should people with Down syndrome have theright to have children? The results were interesting:People who knew people with Down syndrome said,Yes, people with Down syndrome should have thesame rights as the rest of us. But many of those samepeople responded, No or I dont know to the ques-tion of whether people with Down syndrome should beable to raise children. In contrast to this finding, respon-dents who didntknow a person with Down syndromeresponded: Yeah, of course! to the question aboutraising a child.

    Its troubling to me, as a parent of a child with Downsyndrome, what something like that statistic suggests. Ifa person with Down syndrome isnt capable of takingcare of a child, how does that look to the broader com-munity? Does that suggest this person is not capable, ingeneral? How do we push the envelope in a safe way, ashas been done over the last few decades, to a pointwhere we can prove low expectations are, in fact,exceeded again and again and again?

    The central issue is that we just dont have the research.Wed love for the support behind Down syndrome tomatch that of autism and other intellectual and develop-mental disabilities. These groups have benefited fromgreat studies about how their kids learn. In respect toDown syndrome research, the data is generally what iscalled n of 1s, meaning theyre drawn from a study ofone person at a time. In these cases, the data shows,Oh, Isabel can read, and then, Oh, Johnny can read ata first grade level. Its all these singular

    Radcliff: Theres no way to draw any kind of correlation

    or relationship?

    Whitten: No. And its not being shown exactly whytheyre able to learn. Thats the sort of information thatcould help create a toolkit for the teacher who, Godbless him or her, is in the public schools and facing apoor teacher-student ratio. Over the next couple ofdecades, the 10 percent of students who require Individ-ualized Education Programs (IEPs) will move closer to15 percent. We need to help them. We need to haveresearch. We need the research community and the med-ical community to see our kids with Down syndrome asequal to others and worthy of the investment. We needto take the results of that research and medical care, andfeed it to parents and medical students and teachers.

    That would be good for everybody.

    Radcliff: I want to go deeper into a subject that youbrought up a little bit earlier: the right to life debate.

    I dont want to get too political about it, but I dontthink that you and I can have this conversation and notbring up the topic.

    Whitten: Thats a good point.

    Radcliff: You are a parent who had to make a challeng-ing decision, and I assume some people encouraged youtowards one choice or the other. It seems that yourevery happy and comfortable with the decision you made.

    Whitten: Republicans and Democrats alike have kidswith Down syndrome. People who are pro-life or pro-choice have kids with Down syndrome. Our organiza-tion is like Switzerlandmeaning neutralin thatrespect. We dont touch the issue. From a personal per-

    spective, however, Im not shyand maybe I shouldbeabout saying Im pro-choice. Ive always been pro-womens health and pro-family health, but my ownchoice was to keep my daughter. Today it seems ridicu-lous to speak of the situation in those terms: My daugh-ter is just my daughter, and shes fabulous.

    But, yes, there was a decision-making period that waschallenging. I was catapulted into it when a blood testshowed that I had a one-in-nine chance of having a childwith Down syndrome. When I went to see an amniodoctor, I was shocked because they didnt offer me anygenetic counseling, and they should have. In fact, Ifound there was an incredible bias towards termination.

    On the road, Whitten stays connectedto her Denver-based foundation.

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    At the doctor, I saw a homemade video that basicallysaid, Theres a chance your baby is going to terminatenaturally in utero. Theres a chance your baby will diebefore the age of one. And theres a chance your babywill die before the age of three. Percentages weregiven for all of these possibilities. So this video gaveme the impression there was a good chance that mychild, who is eight years old today, was going to die

    before the age of three. And then a list of potentialmedical problems went flying across the screen.

    When the video ended, the genetic counselor came inand said, Please dont cry. Roughly 80 percent to 90percent of moms who find out their babies have Downsyndrome choose to terminate. You can terminate,too. She gave me a book of photography filled withpictures of people who chose to take photos with theirfetuses as a way of feeling closure on termination. Icould certainly understand having these photos taken ifyoure the mother of a stillborn child. But at 18 weekspregnant, I was like,Are you crazy? Are you sick? Justthe idea of it!

    When I went to get my amnio, I realized within two sec-onds that the voice on the video was my doctors voice.I had been watching a video that he had made! Thatvideo didnt give me any information about Mile HighDown Syndrome Association, our local outreach group.So clearly the message was

    Radcliff: Skewed.

    Whitten: Yes. Later I read some research done by a man

    pursuing a masters in public policy at the KennedySchool at Harvard. He did a wonderful survey that showedthe majority of medical students and doctors surveyed feltill-equipped to deliver a Down syndrome diagnosis, yetthe majority of them also admitted confidentially andanonymously that they would advise patients to termi-nate the pregnancy.

    Are these bad people? No, theyre just not being provid-ed with the materials they need to give an informed pre-natal and postnatal assessment.

    Radcliff: If all they know is the range of potential prob-lems of life with Down syndrome, it would be natural forthem to offer biased advice.

    Whitten: Right. I think its also natural for doctors andprofessionals to resist questions or pressure from parentgroups. Thats why building the Linda Crnic Institute,which is the first academic home for this kind of study,is important. Its a place where academicians, scientistsand medical professionals can come together, in a pro-fessional and thoughtful way, to create information.This is important for professionals because it helps themfeel safer and more confident that their information isaccurate and unbiased.

    Radcliff: The more examples that are propagated ofsomeone with a disability living a happy, productivelife, the more likely it is that other families can makechoices that take into account the positives along withthe potential problems.

    Whitten: Absolutely. I dont think any parents haveever made a snap decision to institutionalize their

    child. I think professionals had a profound influenceon these parents choicesand their childrens fates.In the 1980s, people with intellectual and developmen-tal disabilitiesDown syndrome being a large part ofthat demographicwere institutionalized at a veryyoung age. They were neglected and abused andforced to undergo sterilization. It was horrible.

    During that same period, the medical community madea commitment not to give life-saving procedures topeople with Down syndrome. So today I can introduceyou to several beautiful people who are in their thirtiesand forties, who are going to die in the next few years,because they werent given a heart operation 30 or 40years agoa heart operation that cannot be performednow. These people are dropping off the face of the earththrough no fault of their own.

    Radcliff: Wow. Its as if they have bombs inside of them.

    Whitten: Yes. And its just horrible to know the reasontheyre not going to live longer is because some persondecided that they werent worthy of life-saving proce-dures. Some doctors had even categorized the act of giv-ing milk to a baby as a life-saving procedure. This

    resulted in doctors starving babies with Down syndrometo death in hospitals. There are photos of nurses tryingto knock down doors to feed these babies.

    Radcliff: Unbelievable.

    Whitten: In the 1980s, all of the state governors gottogether and signed legislation to prohibit denial of milkto our babies, because it had previously been deemed asa life-saving procedure. Im sure this same horribledenial of life happened to people with other develop-mental disabilities, as well. We hope our work within

    the area of Down syndrome has an effect on this wholefield, but we need to start to recapture what has beenlost for people with Down syndrome over the lastdecade. Once we get into this as a human- and civil-rights issue, I think the end result will help everybody.

    Radcliff: How much awareness of her disability doesyour daughter have today?

    Whitten: None. Its very interesting. My husband and Ihave decided we will answer those Am I different?Why am I different? What is Down syndrome? ques-tions when our daughter chooses to askand she isabsolutely capable of asking.

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    Obviously, as Im running the Global Down SyndromeFoundation, youll often hear the term Down syn-drome in my household. But we never talk about ourkids in front of our kids, as a rule. If, for example, Iwant to share a story with a co-worker about my daugh-ter, I always ask my daughter for permission. Most ofthe time she says yes, and sometimes she says no.But thats the general philosophy in our household withany of our children.

    My son, who is five, sometimes asks me questions like,People with Down syndrome cant speak, right? And

    Ill say, Of course they can speak, honey. Why do youask that? So then we talk about what it means to speak.My son knows there is a difference between someonewho has Down syndrome and someone who doesnt, buthe also knows its not a difference we talk about interms of that person. My sons best friend is SouthAsian. Ive told my son, You dont talk about this kidas the boy with dark skin, right? And you dont talkabout Mommy as the Asian chick.

    [laughter]

    Ive talked with a lot of older parents about how theyaddress Down syndrome with their children. Some par-ents tell their kids about the condition right away. Somewait until their child is an adult. In several cases, thequestion has never been raised or answered.

    Radcliff: When Im walking down the street on mycrutches, its usually the little kids who are the first toask questions about my cerebral palsy. If they ask, Itell them what my condition is. But its usually theirmothers who are quick to say, Dont ask that ques-tion. The mothers immediately apologize to me,which only creates another level of discomfort thatwouldnt exist if the kids had been allowed to learnand explore.

    Whitten: Thats what has been really powerful aboutour information gathering. I once co-taught a class atthe University of Denver for three hours. Twenty-eightstudents in the class were getting their masters degreesin education. They were all going to become teachers,but only two were going to become special-educationteachers. And by the end of my three-hour lesson, Iasked the class, How many of you believe having achild with Down syndrome in a class benefits all of theother children in that class? All of the students raisedtheir hands. But then when I asked, How many of youthink the parent of the child sitting next to that child

    believes the same thing? Nobody in the class raisedtheir hands.

    Radcliff: Wow.

    Whitten: Thats a problem. And it suggests the people inmy class were anointing themselves as saints and sav-iors. I think society has gone through an amazingchange, and we do benefit from the fruits of the labor ofthe 60s and 70s, but we havent yet recaptured thatsort of momentum. The story hasnt been told and theright kind of information hasnt been given to the pro-

    fessionals. Its our job to ensure that happens.

    Radcliff: Otherwise people are likely to get locked intotheir own modes of working with disabilities.

    Whitten: Right. So were really hoping to influence howteachers perceive these students. If you think no one butyou values a certain group of people, that suggests youmay have a bit of a savior-saint complex.

    Radcliff: Its well-intentioned, however.

    Whitten: It is.

    Radcliff: What is the general response you get when you

    David Radcliff and Michelle Sie Whitten having aquiet chat at a restaurant in Beverly Hills, CA.

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    tell people about the work you do and why its important?

    Whitten: The response varies depending on the commu-nity Im addressing. If Im talking to people in theDown syndrome community, or in the field of intellec-tual and developmental disabilities, they get it and itswonderful. So many collaborations have percolated ondifferent fronts because of that sort of energy. If Im

    talking to someone who is outside of that community,however, it depends. There are people who just are notcomfortable with differences, and we may never convertthem into people who are interested in our work. Butthats true for every kind of labor of love, whether or notit involves a medical condition.

    Radcliff: Or in respect to any minority group, in anysense. There will always be outliers who are indifferentto catching up.

    Whitten: Or they dont care or they dont have the band-width or its not a priority to them. We are only givenone life to live and time is short, so finding what yourepassionate about is so important. People who want bet-ter lives for people with Down syndrome, people whowant better lives for people with intellectual and devel-opmental disabilities, and people who believe in humanand civil rights for everybody are really our sweet spot.If you have any of those interests, then how can you notbe interested in and supportive of our work?

    Radcliff: If your aim is to engage empathetic people, Idlike to believe thats a large target audience.

    Whitten: Absolutely. At our organization, rather thanframe the issue as one of disabilities, we use thedescriptor differently abled. We think thats a nicerway to describe people. Eventually well launch thiswonderful website with a section about words and lan-guage. Theres been a big movement within the Downsyndrome community to use people-first language,and I understand it, even though, grammatically, its alittle odd.

    Radcliff: Its sometimes a challenge to write that way.We use people-first language in the magazine.

    Whitten: I understand the reason for it. Theres a wholegeneration of people who still say Down babies,Down kids and Down families. I just think itsalways important to consider the source. If theres anarticle about Down syndrome in the newspaper, forexample, and its fabulous, its great, its positive, itseverything you want, that editor might still receive anoutpouring of mail from angry people beating up thatnewspaper for not using people-first language.

    Radcliff: And that misses the point.

    Whitten: Yes. Consider the source. Is the overall effectof the piece a positive one? Use these moments as

    opportunities to educate, not to beat somebody up. If

    you make a choice to berate that person and that orga-

    nization, you might lose their support forever. This is

    a society in which there is free speech, and there are

    plenty of opportunities to educate. It took me two

    years before I got accustomed to using people-first

    language, and were going to give a newspaper report

    two seconds?

    Radcliff: I used to refer to myself as disabled all the

    time. It didnt even occur to me what that suggested,

    until it was explained. Now I get it, and see the value in

    the person-first language.

    Whitten: I had that same sort of ah-ha moment in a busi-

    ness class in graduate school. The teacher was lecturing

    about a business manager and eventually used the pro-

    noun she. I realized that I had been envisioning a man

    in my head, the whole time. Thats when I was first

    ignited to the power of language, which is so amazing.

    Radcliff: How has your relationship with your daughter,

    paired with the work youve done for the Down syndrome

    community, influenced your worldview?

    Whitten: Im the fourth of five children in an immigrant

    family: Dads from China, and Moms from Italy. There

    was always a heavy emphasis on education and achieve-

    ment in my family, and Im kind of a type-A personality.

    But today Im much more concerned about my daughter

    and my son finding their way and being happy, than I am

    with a score on a piece of paper.

    Now, it could be that having any child would have pro-

    pelled me to make his or her happiness and health my pri-

    ority. But I think the fact that my daughter is challenged

    in certain intellectual pursuits has made me a better mom

    than I otherwise would have been. I think I might have

    been more aggressive about academics with my children,

    if it had not been for my daughters challenges.

    Ive always had a lot of patience with kids, and Im a

    much more patient person, in general, when interacting

    both with kids and adults who have Down syndrome.

    But I remain impatient in my desire for things to be bet-ter and more fair. On the home front, I feel my experi-

    ences make me a better wife to my husband, as well.

    My daughter has opened my eyes to a whole group of

    people that, to many of us, almost dont exist. I had

    thought I was a worldly, educated person with a broad

    field of friends and colleagues. But theres this huge

    populationarguably the largest minority in the United

    Statesthat had for so long been invisible to me. Rais-

    ing my daughter has made me a much better person.

    Shes ignited my life and opened my eyes.

    globaldown.org

    http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/http://globaldown.org/
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