Last week I received an email from Stephen Drake, research analyst, for Not Dead Yet. He wrote that he and Diane Coleman might be on a syndicated television program called Doctor Oz. The subject was assisted suicide, not exactly the usual afternoon television fodder. To say I was skeptical would be too generous—daytime television is not exactly known for quality programming and I had never heard of Dr. Oz. As it turns out Drake and Coleman could not appear. I decided to attend knowing some members of Not Dead Yet would be present as well. I had three concerns: first, the daytime television model is for tear jerking, maudlin depictions of any issue and this would undermine any serious discussion. Second, would the show use people with a disability as mere window dressing for the viewing audience. Third, would the show be grossly biased. My concerns were well placed. The taping of the show was in my opinion a train wreck. It was an amazingly horrible experience. All my concerns came to fruition. In fact I would go as far as say the show, its host and producers were unethical.
WednesdaywasadarkandrainywindydayhereintheBigApple.We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Ourcarservicepickupwasscheduledfor7:15AM.Wecouldn’tfindthevanwhichwasparkedfarfromourdoor andgotsoakedbutwegottotheaccessibleentranceto30Rockbefore8:00.
JulieMaury,BillPeace,HopeDerogatisandAriNe’eman, all people with disabilities and disability rights advocates,werealreadythere.We had each been interviewed by producers prior to being invited to appear on the show. WeweredirectedtoalargeelevatortothesixthfloorwhereweallshowedourIDsandweregivenourtickets.Wewerereceivedverycordially,withbigbrightsmiles,bytheproductionstaffwhoalllookedlikehighschoolcheerleaders.“Areyouexcitedtobeontheshow?” oneofthemasked.“AsmuchasIamwhenIgotothedentist,” Nadinaanswered.
ThoughwehadneverseentheDr.Ozshow,weexpectedittobelowquality,shallowand(especiallyhavingreadSteve’sblog)extremelybiased.ButwehadnoideaofhowgreatthebiasandhowblatantthehostilitythatawaitedusinOz’sstudiowouldbe.Wewerebroughtbacktotheelevatorandthenescortedintoasmall“holdingroom.”Withsomedifficulty,weallsqueezedin.Dr.Byock, a palliative care doctor who opposes assisted suicide,stoppedintointroducehimselfandweallpleasantlyshookhands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.
Wetalkedamongourselves,decidingwhowouldmakewhichpoint.Verynaively,wethoughtwewouldallgetachancetospeak.Thenayoungman,accompaniedbysomeonewithavideocamera,enteredandintroducedhimselfasGreg.Hesaid he was a producer and askedustoarticulateouroppositiontophysicianassistedsuicide.Eachofushadsomethingtosay and helistenedandaskedquestions.Heexplainedthatinthefirstsegmentoftheshow,Dr.Ozwouldbringouthisspecialguest,MontelWilliams,whowouldexplainwhyheisinfavorofassistedsuicide,thenDr.Ablowwouldargueagainst,andthenawomanwithALSwouldbebroughtout.Gregaskedthatwenotinterruptorheckle,andthatwewouldgetachancetospeakafterthewomanwithALS.Montelgaveadramaticperformance,grabbinghislegsfromtimetotimewhilehespoke,hisfacecontortedinpain.Hesaidhewantstohaveawayoutwhenthepaingetsunbearableandhewantstodiewithdignity.Dr.Ablowgavesomegoodarguments,saying “Iwouldneverlegallyallowphysicianstodecidewhoshouldliveandwhoshoulddie…physicianassistedsuicideisaslipperyslope…”ButrightfromthestartitwasveryobviousthatDr.Ozandmostofhisaudiencewerenotinterestedinhearinganyargumentsagainst.ThenDr.OzintroducedDana,anAfricanAmericanwomaninherlate40sorearly50swithALS.Herattendantrolledhertoaspotrightinfrontofthepanel.Shesatinamanualchair,somewhatreclined,wearingaventilatormask.Avideoplayedonthebigscreens,showingDanabeforetragedyhit,healthy,strong,athletic… (very exploitative). Thentheventilatormaskcameoff(theventilatoralarmedbriefly)andDanabegantospeak.ShesaidshehadbeenlivingwiththeprogressionofALSfor8yearsandshewastired.Shehatedhavingtodependonothersforhercareandshecouldn’ttakeitanymore.Shesaidshewasdepressed,lonely,hadnofriendsleftandshewantedtodie. Nadina and I looked at each other and said “that’s why she wants to die.” Nadina quickly jotted a note in preparation for her comments.
AsDana spoke,thesighsandthesnifflesfromtheaudiencekeptgettinglouder.Thecheerleaderswentaroundwithboxesoftissues,thebrightsmilesontheiryoungfacesnowreplacedbymournfulexpressions.Dr.OzaskedDana’ssonhowitfelttolivewithhismom.Hesaiditwassadandthat,thoughhedidn’treallywanthertodie,healsodidn’twanthertosufferanymore.Dana’sdaughtersaid: “It’sheart-breaking,unbearabletowatchhersuffer.She’shadenough.”Dana’ssister,whohasherhealthcareproxy,reiterated:“Shecan’ttakeitanymore.She’ssufferedenough.”Itwasobvioustous(butIguesstonooneelse)thatthefamilyhad“hadenough.”
Greghadpromisedthatafterthebreak,wewouldhaveachancetospeak.AfterweheardDana,wedecidedthatIshouldgofirst,sincemyphysicalconditionis,outwardly,verysimilartohers, and my need for a ventilator is actually greater than hers.SoItoldmystory,includingmyMS diagnoses,thebreakupofmymarriage,howbleakthefutureappearedtomethen,andtheresultingnear-suicidaldepression.IsaidhowgladIwasthatnolethalprescriptionwasavailableformethen.Isaidthatmeetingdisabledpeopleandbecomingpartofanactivistcommunitygotmeoutofthedepression.ThatIfellinlovewithNadina18yearsagoand,inspiteofmylosingfunctionandattimesbecomingdepressed,Ileadafull,richandveryhappylife.
Nadinapickeduphereandsaidthatlosingfunctionoftenisaccompaniedbytemporarydepression,andthathavingavailablealethalprescriptionwouldbeverydangerousforsomeonewithaprogressivedisability.Thenshestartedsayingthatassistedsuicidewasusuallypresentedasa“choicefortheterminallyill,” buthereweweretalkingaboutpeople(Montel,Dana)whowerenotterminallyillbuthaddisabilities.Dr.Ozdidn’tlethercontinue.Hequicklywalkedawaywiththemike,whileNadinayelled“I’mnotfinished.”During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. “I’llcomebacktoyou,”hesaid.Buthenever did.
InthenextsegmentDr.Ozbroughtontwomorepanel guests,Dr.IraByockandBarbaraCoombsLee from Compassion and Choices. Dr.Byockwasverygood,statingtherewasnoneedforassistedsuicidegiventheavailabilityofgoodpalliativecare.HepointedouttoDanathatshecouldrefusetreatment.Hedidsoinaverygentleway.Heaskedher:“doyouwanttotellyourdoctors,maybenexttimeyou’rehospitalizedwithpneumonia,thatyou’drathernothavethemdoanything,letnaturetakeitscourse?”(Maybenothisexactwords,butsomethinglikethat).Danadidnotanswer.Dr.Ozquicklysteppedin.“Letheranswer” Nadinayelledout,“shedoesn’twanttodie.” ButDr.Ozhadquicklychangedthesubject.Montelkeptrepeatinghewantedtomaintainhisdignity.Afewtimesweyelledout“Whatdoyoumeanbydignity?” and“Doyouthinkwehavenodignity?”BarbaraCoombsLeedidn’tsaymuch.Shedidn’tneedto.Bythetimeshecameon,theargumentinfavorofassistedsuicidehadbeencompleted(ifthereeverwasan“argument”– fromthebeginningitwasclearwhichsideDr.Ozwasonandthattheshowhadbeenscripted). Dr.Ablowwasbooedafewtimes.Dr.Byockwasbooedwhenhesaid,“We’renottalkingaboutchoicebutaboutcontrol.Youwanttomakesureyoudiewithyourbootsonandmakeup.”Everytimeanewsegmentstarted,Dr.Ozwouldsaythingslike:“Thequestiontodayis:dowehavetherighttoendourownlifeifwe’resuffering?” or“ifourqualityoflifehasdeteriorated?” Onthebigscreensthequestionwas:“Doyouthinkyouhavetherighttoendyourownlife?” (justassloppyandastheshow’s onlinesurvey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).Thefinalsegmentwassupposedtobequestionsandcommentsfromtheaudience.Weweredividedbyanaisle into pro and con.Duringthebreak,Nadinamanagedtogettheattentionoftheproducer,Greg,whointerviewedusbeforetheshow.“Dr.Ozdidn’tletmespeak,” shetoldhim.“NDYershaveauniqueperspective.Wewanttobeheard.” Heanswered:“I’msorry.”Dr.Ozletaright-to-liferspeakbriefly.Hecalledme(Danny) ahero.AndMontelreplied:“let’s not pitpatientagainstpatient.”Julieyelledout:“We’repeoplenotpatients”, but without the microphone, none of us could be heard. Ahospicenursespokeagainstassistedsuicide,mentioninghowawoman’slifewasprolongedlongenoughforhertoholdhergrandchildinherarms.Butmostofthecommentswerefromtheother sideoftheroom.Horrorstoriesaboutpeoplemadetosuffer, told by someone other than the person, and you couldn’t tell the real cause of the suffering.Nadina,Julie,Bill,HopeandArikeptraisingtheirhandsbutDr.Oztotallyignoredus. Oneguysaid:“TheseNotDeadYetmembersareselfish.They don’t care about people suffering. Theydon’twantanyonetohavechoice.” Weyelledout“It’stheotherwayaround.”Dr.Ozkeptignoringus.Butatonepoint,hewasrightnexttoAriandArihadhishandraisedrightinfrontofDr.Oz’sface.Dr.Ozaskedhim:“Areyourighttolife?”Arianswered:“No,I’mwiththeNationalCouncilonDisability.”Dr.OzlethimspeakandAriwasgreat.HegavesomestatisticsaboutOregon,andeven mentionedtheLatimercase, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.WetriedaftertheshowtoreachouttoDana.Julietriedtocatchupwithherandherfamily,butwaspushedawaybyDr.Oz’sproductionassistants. AllofusNDYerswereextremelyfrustratedandagitated.Weallagreedwehadbeensetupandjustusedaswindowdressing.Thataudiencewasamicrocosmofoursociety.Mosteveryoneinthataudiencewasconvincedthatdisabilityisafateworsethandeath.Mostofthoseinfavorofassistedsuicidethoughtwewereselfishforwantingtolivenomatterwhat.Others,liketheright-to-lifers,sittingalongsideus,sawusasheroicandsaintlyforputtingupwithwhattheyimaginedwasgreatsufferingandnotsuccumbingtosinfulthoughtsofsuicide. Sittinginthatstudio,wesawmoreclearlythaneverhowveryimportantNotDeadYet’sworkisandhowextremelydifficult.
My thanks to Bill, Danny, Nadina and all of the other disability activists who went through the ordeal or participating in what – in hindsight – is a circus masquerading as a show on health issues. –Stephen Drake