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
Well, thank goodness no one from Final Exit Network attended, as I suspected, along with myself, as the production at that show seems as much of a mess as it does during the phone consultation interviews their producers give in advance, which is enough of a mess as it is. I doubt some of the more confrontational footage in the filming for the episode, will even air, as they’ll likely try to make the final product seem like a sad, somber story of the lady who wants to die from what seems to be more from the depression than from the physical disability itself.
This makes me even more angry about what happened regarding what could have included my involvement in the show. Had the producers done what they initially seemed to want the episode to be about, which was to include Final Exit Network and myself, and even being at least halfway decent enough towards Not Dead Yet, by bringing Stephen and Diane on with us, this could have been a really great episode with intellectual dialogue, rather than an emotional wreck, only to lead to frustrations of those involved. I don’t even fault those from Not Dead Yet who did attend the episode, for getting frustrated.
Sounds to me that the show went way out of line, away from what a really good right-to-die discussion should be, and didn’t allow for proper, polite debate between both sides. Of course, I didn’t expect it to be a good episode, after what had happened to me, in my dealings with the show producers. And Greg, well, he’s the biggest ****** of them all, seriously. All I got from them were lies and deceptions, particularly from him. I could go on and on about them, but as evidenced, it can be summed up fairly simply by what they have done. Clearly from that, they don’t seem to give a damn about people with disabilities, whether they are for or against the right-to-die. They just want to make a mockery of us, and that sure seems to be what they did in filming for the episode.
Please let us know when this mess is going to air on television. I still want to see how they end up further butchering what could have been a great episode back in the early stages of conception.