In interviews with The Defender, the founders #CanWeTalkAboutIt said they hope to break the culture of silence around COVID-19 vaccine injuries by encouraging people to share their personal vaccine injury stories.
Interview by: Michael Nevradakis, Ph.D. for The Defender. Nevradakis is an independent journalist and researcher based in Greece | The article has previously been published by Children’s Health Defense
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The founders of a new online campaign — #CanWeTalkAboutIt — hope to break the culture of silence around COVID-19 vaccine injuries by encouraging people injured by the vaccines to share their personal stories.
The campaign also seeks to help people injured by the vaccines network and locate resources and information in their own countries and communities.
It also invites them to submit a black-and-white photo, with their right sleeve rolled up, wearing a band-aid to symbolize that they got the vaccine, and share the post, with a short description of the injuries they experienced, on their social media networks with the #CanWeTalkAboutIt hashtag.
In an interview with The Defender, Agnieszka Wilson, one of the founders of the campaign, said she became aware of questions surrounding the safety of various vaccines after sustaining a probable vaccine injury — rheumatoid arthritis, which she developed after she got the Tdap vaccine — during her pregnancy.
This incident led her to discover the silence that often accompanies vaccine injuries.
“If you take a headache pill and you see that there’s a side effect that makes your skin blue, then you obviously might say ‘okay, it might be from that, right?’” Wilson said. “But when it comes to vaccines, you can’t really talk about these things.”
Wilson said that the silence led her to do her own research on vaccine injuries.
“That’s when I dug into this whole new level of silence that I didn’t know about, regarding vaccines,” she said.
Wilson said that she wanted to do more than just conduct her own research. She wanted “to do something about it,” she said — which led her to start the New York Medical Freedom Coalition when she lived in the U.S.
After returning to her native Sweden, Wilson launched her own interview program, the “Aga Wilson Show,” on which she interviews doctors and scientists.
Through this program, Wilson became aware about the looming risk of injuries related to the COVID-19 vaccines.
She also noted silence on the part of the mainstream media and a reluctance from ordinary people to speak openly about such issues.
“We all heard and knew that the rollout [of COVID vaccines] was starting and we were going to see a lot of damage done by these vaccines,” Wilson told The Defender.
“But people were really scared, and especially [scared of] being associated with … organizations that were stamped as anti-vax organizations.”
“We all also knew that media was silencing it. These people were denied that these were vaccine injuries [but] we were seeing all of these things happening. So I thought, we need to do something, we need to start making people aware that these are actually dangerous vaccines.”
Wilson’s interviews with experts and her discussions with people injured by the vaccines led her to realize “how completely excluded they are.”
“There’s no disease in the world where you cannot talk about it … you can talk about cancer, you can talk about any kind of disease out there, but not this.
“They have scientists that are willing to do research on this, scientists from the big institutions, and they’re just being ignored.”
The media is complicit in this silence, she said. “There’s something more going on than just this. Why is media being silent? Why are we not talking about this?”
“There’s never been a drug in history that has had so many side effects and no one is talking about it,” she said.
Wilson’s concerns about the side effects, silence on the part of doctors and scientists, and the media’s complicity led her to start the #CanWeTalkAboutIt campaign.
“I always work globally; I thought now we need to do something globally, we need to do a campaign that’s going to start breaking the silence around this issue because people need to know.
“We don’t want any more people to take the shot, especially after what I’m seeing in all of these groups.”
Brianne Dressen, who was injured by the AstraZeneca vaccine during its clinical trial, got involved with the #CanWeTalkAboutIt campaign soon after its launch.
Dressen, whose non-profit organization, React19, offers “financial, physical, and emotional support for those suffering from long-term Covid-19 vaccine adverse events globally,” told The Defender the #CanWeTalkAboutIt campaign resonated with her.
Dressen said she was not only compelled to speak out, but also to help others do the same.
“Speaking out, especially in today’s climate, is especially difficult.”
“The injured largely trust other injured,” she said. “We have been exploited and used so many times by people who just don’t quite take the time to understand the impact they can have on us and our health.”
Dressen described the situation as a “double whammy” for the injured, as they “have been censored and stripped of any ability to have a voice by one side, and when we do speak out, many times the tone from those who wish to use our stories is tone-deaf, dehumanizing.”
“So, the injured clam up and huddle together in support groups with only each other,” Dressen said.
Campaigns and support groups such as #CanWeTalkAboutIt play an important role in amplifying the voices of people whose individual ability to be heard or to enact change is limited.
“This campaign, in large part due to the simple and appropriate messaging, was able to strike the appropriate balance for the injured to feel confident enough to speak out. It was also a way for the rest of the world to see us move in unison across the globe.
“It is challenging for sick people to fight for ourselves. Our energy is extremely limited. So instructions and campaigns need to align with not only our personal values but with our ability to physically tolerate the stress of the advocacy work being asked of us.
“It is important that compassionate messaging and respect be there in order for us to feel safe enough to speak out and share our stories.”
The culture of silence described by Wilson and Dressen extends to social media, where specific keywords are frequently censored by the platforms.
Dressen said the #CanWeTalkAboutIt campaign took into account this reality in its planning.
“We already knew what words were going to get shadowbanned, so the strategy was to come up with messaging that sends the right message without outright using these words,” she said.
“I am very careful with my own messaging through our non-profit [React19] to ensure messaging is forward-thinking, has a positive slant. Instead of ‘STOP’ or ‘DON’T,’ we use ‘pro-safety,’ ‘pro-informed consent,’ etc.”
Wilson told The Defender the #CanWeTalkAboutIt campaign has three primary objectives, the first being to provide the vaccine-injured with visibility and a voice.
“People are being bullied … for being vaccine-injured, and no one believes them. So we tried to … create a safe space for these people to speak their stories, but also for others.
“How do we involve the public in this? We want others to support them. That’s why there’s two sides of the campaign. One is for them to tell their stories, but the other is for people to actually acknowledge them and see them because they’re not being seen.”
#CanWeTalkAboutIt also aims to give the public the ability to make an informed decision regarding the COVID-19 vaccines.
“The second [objective] is to raise awareness publicly so that people understand the risks with the vaccine and hopefully make an informed decision,” Dressen said.
“Informed consent is not being given in the situation and the doctors are also not doing their job when it comes to swearing the oath ‘do no harm.’ So we want people to be aware.”
Fundraising is the campaign’s third objective, according to Wilson, with the purpose of “supporting all of these organizations out there that are doing the work to find solutions for the vaccine.”
Indeed, the #CanWeTalkAboutIt campaign has partnered with a number of organizations, including Children’s Health Defense Europe, the American Health & Freedom Coalition, the World Freedom Alliance, the World Council for Health and Millions Against Medical Mandates.
The campaign also collaborates with local and country-based groups “that already have their communities in place.”
One of the goals of these local partnerships is to help the vaccine-injured find support groups near them.
“We’re pulling together those groups … because we want to build communities right on the website as well, so that people can find each other,” Wilson said.
Networking is just one of the components of the #CanWeTalkAboutIt campaign, according to Wilson. The campaign also wants to host more live webcasts, like the June 17 inaugural event.
According to Wilson, the event brought together “five experts and five injured, who … shared their stories and shared what they have been through in terms of adverse events or adverse reactions,” allowing for a discussion with the experts on these issues.
“The most important thing was that this conversation is so needed and we need to continue it because we need to do more research, more surveys,” Wilson said.
“We need to have people tell their stories so that the experts can understand what is going on. … We will continue having webinars more focused on specific topics so that we can get to the bottom with this and also support the campaign.”
By sharing the stories of the vaccine-injured, campaigns such as #CanWeTalkAboutIt can help such individuals avoid continuously recounting their stories and reliving an event that may have been highly traumatic for them.
“We need to understand the trauma that these people are going through, and listen to them. Our job really is to ask them how we can create a safe space.
“Some of them … don’t want to tell their stories over and over again. It comes back to their trauma and they relive it, while others who are the spokespeople are actually the ones who maybe are more comfortable doing that.”
Another challenge faced by the vaccine-injured is that their concerns are frequently dismissed by doctors.
“Not only are they not being heard or … the doctors are not listening, but basically they’re not getting help,” Wilson said, citing this example:
“We had one Swedish woman who was part of the webinar and she was telling us how she just goes from one doctor to another and they just keep sending her back and forth and no one can tell her what’s going on.”
“People have a very hard time because they just keep being dismissed. A lot of them are being sent home, [told] that they have anxiety, even though they have severe symptoms which could not be explained by just anxiety.”
Dressen, who experienced adverse events within an hour of receiving the AstraZeneca vaccine on Nov. 4, 2020, told The Defender how doctors dismissed her.
“Within the first year I saw close to 40 doctors, and had well over 60 office visits, a trip to the NIH [National Institutes of Health], and several hospital stays,” she said.
“I was plagued by an ‘anxiety’ diagnosis for six months until I was able to go to the NIH. NIH confirmed it was post-vaccine neuropathy, and one internist confirmed the same after the NIH made the initial diagnosis.”
This “anxiety” diagnosis came despite a broad array of symptoms, Dressen said:
“My reaction started within an hour of my shot and was tingling down the same arm as my shot. From there my health declined over the next 2.5 weeks with double and blurry vision, sound sensitivity, tachycardia at rest, sweating, brain fog, dissociation, limb weakness, internal vibrations (that still haunt me to this day), confusion, vibrations in my brain, tinnitus, hair loss, severe nerve pain, etc. I had well over 30 symptoms.
“I ended up in the hospital because my legs stopped working. I remember my husband standing over my bed begging my medical teams to just run one more test, look at one more thing. Without him, there is no question I would be dead.
“I was sent home with in-home physical and occupational therapy to recoup my legs, retrain my bladder and learn how to do simple tasks like sort a box of toys … and a diagnosis of ‘anxiety.’’’
Several of these symptoms continue to the present day, according to Dressen.
“I still have well over half of my symptoms: leg weakness, neuropathy, tinnitus, POTS [postural orthostatic tachycardia syndrome], internal electrical feelings. But the sound sensitivity and light sensitivity are gone,” she said.
Dressen pays $1,100 out-of-pocket every two weeks for intravenous immunoglobulin.
“This is just one medication I need to stay alive,” she said. “This has impacted my life financially, physically and emotionally. My family’s life and finances are now dramatically different.”
Dressen’s injuries — and her experiences with doctors — led her to testify before Congress, testify before a U.S. Food and Drug Administration (FDA) panel, and participate in a press conference of vaccine-injured individuals organized by Sen. Ron Johnson (R-WI).
According to Dressen:
“My message to lawmakers is pretty simple: after being to the NIH for research and after participating in dialogue with the heads of the FDA for over a year now, I know the government simply is not doing their job.
We did our part. We did what we were told and were assured over and over that if something were to go wrong that there would be a safety net. But instead of a safety net, there is a huge gaping hole.
How long do the injured need to wait before these health agencies do their job? People are suffering now, they are dying now, they are out of work now. They can’t wait 5, 10, 20 years for the intentionally slow wheel of government process to move forward. The pace we are going right now, progress is so miniscule that we all will be dead before the government makes this right.”
This slow and ponderous pace is, in part, due to “special interests, lobbyists and a whole lot of money,” Dressen said, which “have corrupted the process by which individuals like myself can attain proper medical care, engage in research on pharmaceutical harms and receive proper — or any — compensation.”
For Dressen, the #CanWeTalkAboutIt campaign can play a role in pressuring governments and public health agencies to do the right thing.
“The #canWeTalkAboutIt campaign is an effort to bridge that gap between these many sides and provide a neutral and independent place for those who are ready to listen and learn.”
Wilson told The Defender that she would like to see the social media campaign of #CanWeTalkAboutIt get bigger, “so that we can actually go viral and … [inform] the public that this is a serious issue.”
“There are millions of people suffering from vaccine injuries from the COVID-19 vaccine,” Wilson said. “We need people’s help to share so that we can reach out to the masses and warn them that there are huge risks with taking this vaccine.”
Dressen’s message to the vaccine-injured is that “you’re not alone.”
“Never give up, never give in,” Dressen said. “There is one thing this community has that is unlike anything I have ever experienced and it is an enormous ability to love and support one another.”
“For those who are still trapped in their beds just trying to hang on by the hour or by the minute? That little bit of love and compassion could be the difference between life and death.”
For Wilson, the phrase “strength in numbers” applies to those who are vaccine-injured.
“We don’t need to reinvent the wheel,” Wilson said. “We just want people to be able to know who’s out there doing what and where the vaccine-injured can find protocols, communities, to educate them.”
“We need more stories. We need to understand what’s going on in order to do our job. So we want to bring together everyone under this campaign to start collaborating … and support one another, to really have a bigger impact.
It’s time for us to come together and organize better because we’re stronger together. And that’s how we can actually make an impact.”
Aga Wilson said the #CanWeTalkAboutIt campaign also wants to raise funds to research vaccine injuries because governments aren’t doing it.
“With this many vaccine injuries, it’s mind-boggling and absolutely unacceptable for the government and the medical establishment not to go into studies,” she said.
Dressen expressed a similar sentiment regarding the responsibilities of governments toward the vaccine-injured, and the advocacy role campaigns such as #CanWeTalkAboutIt can play in promoting the reform of existing vaccine compensation programs.
“HHS [U.S. Department of Health and Human Services] needs to address the failing, under-powered and under-funded compensation program,” Dressen said.
“Similar to the [Vaccine Injury Compensation Program] vaccine tax that requires drugmakers to pay into a fund to pay for injuries, Washington can draft legislation that will require these drugmakers to pay a similar minimal tax into a fund for independent research on the potential harms of their products. The taxpayer should not have to foot the bill for this research.”
Such efforts can also target the coordinated actions of social media platforms and other entities to classify any news about vaccine injuries as “misinformation” and to subsequently quash it.
Dressen said such practices do not just stifle free speech, they also cause material harm for the vaccine-injured.
“The word ‘misinformation’ is a powerful weapon that divides and dehumanizes,” Dressen said.
The #CanWeTalkAboutIt campaign can bring the public into the mix, by providing “a neutral and independent place for those who are ready to listen and learn,” and also by empowering the public to drive change without waiting for governmental bodies to act, Dressen said.
“The tools to fix this are not just the responsibility of the government. We The People have the power and obligation to unify and demand change. And when that change doesn’t happen, it is our job to enact change.”
Aga Wilson added:
“Divided we fall. But together, our voice is powerful and can drive change. But in order to do that, we must listen and learn first. Can we talk about it?”