Transcript

Is stigma an invisible killer? | Nahid Bhadelia | TEDxNatick

[Music] so about a year ago I found myself homeless now it wasn't so much that I didn't have a place to live but I was actually kicked out of my own apartment you see I was returning from Sierra own from my second stint as a physician in an ebola treatment unit and I received an email from my apartment building telling me to quarantine elsewhere and I was a little taken aback right I've not been exposed to Ebola I don't have the infection I'm not symptomatic in any way but this was November 2014 and if you remember the fear in the US about a potential Ebola outbreak here was really high and if you talked to one of the public health professionals they would have said the chances of getting Ebola in the US was one in 13.3 million but you know certain policies went into play and one of them was the fact that anyone who returning from West Africa had to go through one of five airports if you remember and my return actually coincided with the first two weeks of that policy being put into place and I remember being quickly identified the minute I I came into the Customs Hall and I was taken to an empty room in the back and asked to sit in a plastic chair that was demarcated with plastic tape and about 10t away there's a customs officer and he's asking me all the routine questions have you been to West Africa yes I have have you been in an area where Ebola is active yes I have have you taken care of Ebola patients yes I have so he puts his pen down and then he looks at me and he says no one has said yes so far so then he gets up he walks another 10 ft he picks up the receiver and he says yes sir the doctor said yes what happens next and quickly after that the CDC Personnel came in with full personal protective equipment kind of like the type you see here and mind you this is after I spent 12 hours among hundreds of other airline passengers so they go through their own questions you know and the CDC nurse um then wants to take my temperature but they can't find a disposable thermometer so I offer to use mine you know I've been using it for the last few weeks she looks at me with this incredulous look and says yeah we're not going to let you use your thermometer darn there goes my plan I've been carrying this toy thermometer with me this whole time just in case this would happen I could sneak back in the country I you know I was relatively lucky if you talk to a lot of my colleagues who were returning responders from West Africa they actually faced a lot more stigma some of them refused entry back into their states some actually had their kids disinvited from birthday parties I heard one story when someone was a costed in public by their neighbor long after their quarantine was over and accused of being malicious and irresponsible actually many of them lost their jobs those that were traveling nurses and such and that stigma wasn't limited to those of us that actually were returning from West Africa University of Nebraska Medical Center one of the hospitals that was assigned as a receiving Center for patients who are Americans who are returning with Ebola from West Africa received daily death threats when they were taking care of their patients nurses at bellev who took care of Craig Spencer one of the msf American doctors who return from Guinea and developed Ebola they were refuse service in restaurants and Beauty parlors and some of them lost their Moonlighting jobs and I think for all of us what took us was the fact that here wewere you know we thought we were trying to help the communities the very same communities that we had now become Paras in it is as if I had spent weeks battling this virus and all of a sudden I was The Biohazard and because I was a biohazard I would become an untrustworthy human being it wasn't the policies that took me aback it was actually the fear and the distrust that was pointed at me and I couldn't help but think if this is how we were treated how are Ebola patients treated communicable diseases and stigma actually have a very long history every epidemic seems to create its own set of parias and even the policies that we use to help limit the spread of epidemics such as isolating somebody who has the disease or quarantining somebody who has been exposed to the disease have undue social consequences it's not so much the policies but it's the social judgment that we assign to those that those policies are pointed at and stigma in some ways by one definition is the recognition of a distinguishing Mark and the subsequent devaluation of the person who carries it and usually that Mark is given to a a group of people or an area that's already deemed undesirable and I can't help but Wonder would people think differently about Ebola virus disease if the epidemic had occurred in Iowa and not West Africa think about the time and it doesn't have to be the Black Death right it doesn't have to be Bubonic plague think about the time your child got headlight remember the reaction of the other parents and the teachers right it's as if the othering was instant the minute your child was recognized as the carrier of life and you and your child May recover from the headlice incident but for those who actually have severe infectious diseases stigma can be devastating I had the Good Fortune um in the spring of last year of working with a lot of Ebola survivors who had wanted to go back and work in Ebola treatment units to advocate for patients and at the end of the day after all our training um we would get into a circle and they would tell their stories and the most common theme in all their stories was one of Bravery of survival but also of [Music] dehumanization they felt that they had stopped being a human being and were treated as a virus long before they entered Ebola treatment units they became that thing that cannot be touched that thing that must be put away that thing that's coming to get us and that's not the first time I've actually heard that sentiment K shtino who's the executive director of AIDS action and a lifelong HIV positive Advocate I heard him once speak and he said it's as if the virus took over not just my body but also my identity isn't it interesting what we do right we dehumanize the human and we create a sensient being out of the virus stigma actually also plays a huge role in hampering the very efforts of stopping the epidemic that were're scared of during this particular epidemic of Ebola commercial airlines and shippers stopped flying to West Africa and for those of us on the ground that meant we started running out of physical and human resources to battle this epidemic many times stigma actually causes people from coming forward who have the disease and it continues the strain of and the chain of transmission within the communities and in particular the reason why it's important to talk about stigma and emerging pathogens is because we're starting to see emerging pathogens with a lot more frequency we discover human infections that are new to US every year or year and a half which means this is a result of overpopulation of natural degradation of climate change but it also means that we as a civilization need to strike a balance between being safe and shooting ourselves in the foot when it comes to battling these pandemics how do we do that education education is one of the major ways that you could potentially decrease stigma if you can tell people what the real risks are um of of a transmission you could do that and kamu says this in the novel The Plague he says the evil that in the world almost always comes from ignorance but the difficulty in talking about emerging pathogens is that by their very nature they're emerging right they're at the Horizon of our knowledge so there's a certain amount of uncertainty the trouble is how do you convince the public to listen to your policies when you're at the same time you're telling them you don't know everything about this bug and scientific uncertainty in general is a difficult concept to communicate for scientists scientific uncertainty and statistical variation is part of the natural way of getting to know the world it's like getting the major themes of a Monae and then moving forward ever so slowly to learn about their brush Strokes if you could think the of the world as a big jar of multicolored Marbles and you wanted to know what was inside that jar you would put your hand in You' take got a set of marbles and you'd have some idea what's in there but the more times you put your hand in and more places you put your hand in will give you a better idea but the only way to be 100% sure about what's in that jar is if you took out every single marble and that's just not possible in natural phenomenon for the public scientific uncertainty represents cacophony if there's uncertainty that means anything is possible and that's actually not the truth that little bit of uncertainty that we have about emerging pathogen actually rests on this mountain of scientific knowledge we already have about the way bacterias and viruses work so we can get better at talking about uncertainty but part of the problem is also how risk is perceived influenza kills 50,000 people in the US every year there were 18 measles outbreaks in 22 States while the Ebola epidemic was going on so why is it that the public was obsessed in a one in 13.3 million chance well it's partly about how we are as human beings and perceiving risks we obsess about something that's new on our Horizon rather than risks that we've already made as our background noise we're also actually very upset obessed with risks that are popularized risks that are brought to our attention a lot more than risks that again are not brought to our attention the media doesn't talk about it so the media plays a huge role in the way that we perceive new risks in our communities you know just once I like to have measles be described as the Isis of biological agents right then there's this Beyond education Beyond advocacy nimi not in my backyard in some ways public health is about public morality because public health is not just doctors and nurses it's actually all of our influence on whether we make positive or negative decisions and if that's the case how do you improve public morality one way is to promote practical wisdom this is a chicken performing a bowl triage not an example of practical wisdom but that is not what Barry Schwarz the psychologist meant when he said practical wisdom He suggests that by expecting the lowest common denominator of behavior from everyone and then providing incentives for positive behavior we actually take away from our drive to do the right thing we take away from our virtue and one way to promote practical wisdom without taking away our drive to do the right thing is to celebrate moral exemplars this is Issa French Issa is a head nurse at Kena hospital where I worked in August of 2014 Isa and I worked shoulder toosh shoulder in one of the darkest months of this epidemic he was there in March 2014 when the first patient with ebola arrived at Cana and he has seen over 500 Ebola patients National healthcare workers have faced some of the worst stigma of any of us some of them were driven out of their homes and Villages were forced to stay on the grounds of bolo treatment units so they avoided any Insignia that identified them as Ebola workers so day in and day out they would go in month after month to risk their lives and when they left they hid any signs of their heroism so I remember asking French one day why he does what he does and he said because this is my community because these are my people because these are human beings and I mean that's a good way to remove stigma by rehumanizing the person who has the disease because after all when Isa and I went into that Ebola treatment treatment unit every day we didn't see the virus we saw real complete human beings those with their own life trajectories with their own family and friends with their own hopes and dreams about the future who just had the bad luck to encounter this disease so I think one of the best ways to combat stigma is to actually remember our own Humanity thank you [Applause] [Music]