Anti-science Impact — Authoritarianism

Vaccinations greatly help third world economies.

We all know that vaccines save lives by protecting people against disease. What is less well-known is that vaccines also are an engine for economic growth -- far beyond their health benefits.

I am reminded of this in Tanzania this week, where my organization, the GAVI Alliance, is hosting a conference for its partners. GAVI's mission is to save children's lives and protect people's health by increasing access to immunization in developing countries.

We don't do this alone. We have many partners, including prominent companies that work closely with GAVI. They recognize that in addition to the humanitarian need, countries such as Tanzania are emerging markets that can fulfill their economic ambitions only if they also can ensure good health for their citizens.

The private sector is a critical part of the equation. Our corporate partners know they can do well by doing good.

Consider Tanzania. It has an ambitious five-year development plan that aims to transform the country into a middle-income economy by 2025. The plan includes critical funding to ensure a healthy population by strengthening the health system, which will significantly improve child and maternal mortality rates.

Tanzania already has begun this process by working closely with GAVI and its partners to significantly increase its routine vaccine coverage rates to above 90% today from 79% in 2001, the year before GAVI began its work there, according to data from the World Health Organization and UNICEF. At the same time, Tanzania's GDP growth has been astounding, rising to $23.7 billion last year from $10.2 billion in 2001, according to the World Bank.

Is there a connection? Further study is needed in the case of Tanzania. But we know for a fact that vaccines -- in addition to saving lives and improving health -- are the cornerstone of a vibrant economy, fuel growth and serve as a magnet for foreign investment. Indeed, research has shown vaccines to be among the most cost-effective investments in global development.

These academic papers, including one recently published that focuses on how to measure the economic benefits of the HPV vaccine, are getting noticed in African countries -- not only by health ministers, but also by finance ministers and other officials.

For instance, I attended a landmark meeting in Tunis in July organized by the African Development Bank, where its President Donald Kaberuka brought together a variety of ministers and experts to discuss how to allocate budgets and make healthcare a national priority.

I was in Tunis because of the wide recognition that immunization can be the high-octane fuel that leads to increased trade, capital infrastructure projects and technological improvement.

This brings me back to the private sector and the benefits many companies now see in playing a role in supporting global health, including immunization services. One benefit, of course, is humanitarian. The GAVI Alliance -- with help from partners such as UNICEF, WHO, the Bill & Melinda Gates Foundation, the World Bank and donors -- has helped countries immunize 370 million people, saving more than 5.5 million lives since 2000.

GAVI now is in the midst of helping immunize another quarter billion people, which could save an additional 4 million lives by 2015. The private sector is involved, providing core business skills to tackle key obstacles to immunization in the developing world.

For example, GAVI is working with a leading telecommunications company to explore the use of its mobile technology with hopes of improving vaccine stock management in implementing countries and alerting parents when children are due for vaccines.

GAVI is constantly looking for partners to lend their business savvy to help us accomplish our mission. An increasing number of them are responding, compassionate in their outlook while aware of the underlying economic value of vaccines.

They understand that this is the highest return on investment they could ever make.

Vaccination saves a ton of money

How exactly do vaccines save money? When a child gets sick with a vaccine-preventable illness (as with any very serious illness), she will need to seek treatment and this of course is going to cost something. Now if the child gets a serious complication, she may need to be hospitalized. So there are hospital bills, medications, and doctor visits before, during, and after the illness. Tragically, if there are long-term complications, such as deafness from mumps or brain damage from measles, there will be costs associated with this as well (adaptive devices, special education requirements, etc).

One study in the journal Pediatrics examined the total costs associated with a variety of vaccine-preventable diseases—and thus the savings incurred by vaccinating—and the results were impressive. For example, the cost per hospitalization for an infection with haemophilus influenza type B (Hib), a very serious bacterial illness,with resulting meningitis can cost over $43,000. An estimated 19,000 cases of Hib infection will be prevented over the lifetimes of children born in 2009 because of routine immunization, saving an estimated $1.8 billion in disease-treating costs. When you add in all the other diseases that we routinely vaccinate against in the United States, the estimated savings are staggering.

In economic terms, those are considered "direct costs"—that is, the money that goes directly to the care of an ill child. But it's important to remember that when a child gets sick and hospitalized, there are costs beyond simply treating the illness. Her parents may have to take time off of work, incurring lost income. There may be insurance copayments to meet. If the child has long-term consequences from the illness, there may also be lost opportunities for income. And should this child have inadvertently exposed others, there might be a cascading public health crisis, with daycares shut and public health agencies mandating quarantines.

Public savings

The public can incur significant expenses from nonvaccination as well, often referred to as "societal" or "indirect" costs. For example, it can cost public health departments close to $10,000 per day to contain an outbreak such as the recent measles outbreak—including identifying all possible infections, making contact with people who may have been exposed and following them for the entire incubation period, issuing orders to exclude unvaccinated children from school, working with other local health departments and hospitals on containment and treatment protocols, and providing additional vaccinations. The average outbreak control period is 18 days; that’s $180,000 to control a disease that could have been prevented through vaccination.

These costs, both direct and indirect, are so impressive that it’s considered financially irresponsible to limit access to routine immunizations based on family income or insurance status. In 1994, the U.S. government began a program called Vaccines for Children, which provides vaccines to children who would otherwise not be able to afford them. This program is estimated not only to have saved countless children from illness and death, but also to have saved nearly $259 billion in direct costs and $1.38 trillion in total societal costs.Think about that: $1.38 trillion saved by vaccines. Honestly, that number makes the 238,857 miles between here and the moon sound like a short stroll, doesn’t it?

The money-saving effect of vaccines is not limited to the United States. Worldwide, the three vaccine-preventable diseases that lead to the greatest mortality in children age 5 and under are pneumococcal disease, rotavirus, and Hib infection. Those children who survive these diseases may suffer long-term complications such as blindness, deafness, or mental retardation. It is estimated that if, over the next decade, we were to begin widespread vaccination against just three diseases (Hib, pneumococcal, and rotavirus) in the world's 73 poorest countries, it would save an estimated $63 billion in treatment and lost productivity costs.

So there you have it. We know vaccines save lives. But it turns out they also save money, directly and indirectly. Yet one more reason to make sure you and your loved ones are fully vaccinated.

Vaccination saves over a trillion dollars.

Whitney et al. 14 — Cynthia G. Whitney, MD1, Fangjun Zhou, PhD2, James Singleton, PhD2, Anne Schuchat, MD1, 1 National Center for Immunization and Respiratory Diseases, CDC; 2Immunization Services Division, National Center for Immunization and Respiratory Diseases, CDC, 4-25-2014 ("Benefits from Immunization During the Vaccines for Children Program Era — United States, 1994–2013," No Publication, 4-25-2014, Available Online at http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6316a4.htm, Accessed 7-22-2015)

The Vaccines for Children (VFC) program was created by the Omnibus Budget Reconciliation Act of 1993 (1) and first implemented in 1994. VFC was designed to ensure that eligible children do not contract vaccine-preventable diseases because of inability to pay for vaccine and was created in response to a measles resurgence in the United States that resulted in approximately 55,000 cases reported during 1989–1991 (2). The resurgence was caused largely by widespread failure to vaccinate uninsured children at the recommended age of 12–15 months. To summarize the impact of the U.S. immunization program on the health of all children (both VFC-eligible and not VFC-eligible) who were born during the 20 years since VFC began, CDC used information on immunization coverage from the National Immunization Survey (NIS) and a previously published cost-benefit model to estimate illnesses, hospitalizations, and premature deaths prevented and costs saved by routine childhood vaccination during 1994–2013. Coverage for many childhood vaccine series was near or above 90% for much of the period. Modeling estimated that, among children born during 1994– 2013, vaccination will prevent an estimated 322 million illnesses, 21 million hospitalizations, and 732,000 deaths over the course of their lifetimes, at a net savings of $295 billion in direct costs and $1.38 trillion in total societal costs. With support from the VFC program, immunization has been a highly effective tool for improving the health of U.S. children.

Data from the 1980s suggested that measles outbreaks were linked to an ongoing reservoir of virus among high-density, low-income, inner-city populations (2). Although most children in these settings had a health-care provider, providers missed opportunities to give measles vaccine when children were in their offices, sometimes referring low-income children to another clinic where vaccines were available at no cost (3). Approximately 50% of children aged <19 years are eligible to receive vaccines through VFC (Immunization Services Division, National Center for Immunization and Respiratory Diseases, CDC, unpublished data, 2014).* Children can receive VFC-provided vaccine if they are Medicaid-eligible, uninsured, American Indian/Alaska Native, or, for underinsured children (i.e., whose health insurance does not fully cover immunizations), when they are receiving services at a federally qualified health center or rural health clinic (1). By providing vaccine for eligible children, at no charge, to public and private health-care providers who are enrolled in VFC, the program helped reinforce the "medical home." Inclusion of specific vaccines in VFC is determined by recommendations of the Advisory Committee on Immunization Practices (ACIP).

To assess improvements in coverage during the VFC era, data were obtained from the United States Immunization Survey (USIS) for the period 1967–1985, the National Health Interview Survey (NHIS) for 1991–1993, and NIS for 1994–2012 (3,4). Children included in USIS and NHIS were aged 24–35 months and those in NIS were aged 19–35 months. USIS and NHIS data were from parental recollection of vaccines received, and NIS data were obtained through provider report.

The cost-benefit model for U.S. children born during 1994–2013 employed methods previously used for children born in 2009 (5). A decision analysis birth cohort model was constructed using data on immunization coverage; vaccine efficacies from published literature; historical data on incidence of illnesses, hospitalizations, and deaths from vaccine-preventable diseases before immunization was introduced; and recent vaccination period data (through 2013, if available; otherwise 2012 data were used for 2013) on these same disease outcomes. Vaccines included all those universally recommended for children aged ≤6 years except influenza vaccine, which has been modeled separately (6), and hepatitis A vaccine. Infants in hypothetical birth cohorts from the period 1994–2013 were followed from birth through death. Benefits of immunization included savings in direct and indirect costs that accrued from averting illnesses, hospitalizations, and deaths among the 20 birth cohorts. Program costs included vaccine, administration, vaccine adverse events, and parent travel and work time lost. Costs were adjusted to 2013 dollars, and future costs related to disease were discounted at 3% annually. The cost analysis was conducted from both health-care (direct) and societal (direct and indirect) perspectives, and net present value (net savings) was calculated.†

When the VFC program began in 1994, vaccines targeting nine diseases were provided: diphtheria, tetanus, pertussis, polio, Haemophilus influenzae type b disease, hepatitis B, measles, mumps, and rubella (Figure). During 1995–2013, five vaccines were added for children aged ≤6 years: varicella (1996), hepatitis A (1996–1999 for high-risk areas, 2006 for all states), pneumococcal disease (7-valent in 2000, 13-valent in 2010), influenza (ages 6–23 months in 2004 and ages 6–59 months in 2006), and rotavirus vaccine (2006). Since 1996, coverage with 1 dose of a measles-containing vaccine has exceeded Healthy People§ targets of 90%, up from <70% before the 1989–1991 outbreak (Figure). For other vaccines licensed before VFC, coverage also was higher in the VFC era, as measured by NIS, than in the pre-VFC era, as measured by USIS. In general, coverage for new vaccines introduced during the VFC era increased rapidly.

Among 78.6 million children born during 1994–2013, routine childhood immunization was estimated to prevent 322 million illnesses (averaging 4.1 illnesses per child) and 21 million hospitalizations (0.27 per child) over the course of their lifetimes and avert 732,000 premature deaths from vaccine-preventable illnesses (Table). Illnesses prevented ranged from 3,000 for tetanus to >70 million for measles. The highest estimated cumulative numbers of hospitalizations and deaths that will be prevented were 8.9 million hospitalizations for measles and 507,000 deaths for diphtheria. The routine childhood vaccines introduced during the VFC era (excluding influenza and hepatitis A) together will prevent about 1.4 million hospitalizations and 56,300 deaths.

Vaccination will potentially avert $402 billion in direct costs and $1.5 trillion in societal costs because of illnesses prevented in these birth cohorts. After accounting for $107 billion and $121 billion in direct and societal costs of routine childhood immunization, respectively, the net present values (net savings) of routine childhood immunization from the payers' and societal perspectives were $295 billion and $1.38 trillion, respectively.

Ableism

Reject the ableist discourse surrounding vaccination debates – whether vaccines cause autism or not is irrelevant – treating autism as a negative condition comes from an incredibly neurotypical position of privilege.

Thériault 15 – Anne Thériault, Toronto-based writer and activist, 2015 (“What vaxxers and anti-vaxxers are missing: Autism isn’t the worst thing to happen to a child”, Quartz, February 11, Available Online at http://qz.com/340623/what-vaxxers-and-anti-vaxxers-are-missing-autism-isnt-the-worst-thing-to-happen-to-a-child/, accessed 7/20/15, KM)

Here are some typical arguments put forward by parents who choose not to vaccinate their otherwise healthy child (by “healthy” I mean they’re not asking for an exemption because the child is immunocompromised or otherwise couldn’t medically tolerate vaccinations). For this example, I will pull quotes directly from a recent New York Times Article, Vaccine Critics Turn Defensive Over Measles: “It’s the worst shot,” [Missy Foster, mother to an 18 month old daughter] said, with tears in her eyes. “Do you want to wake up one morning and the light is gone from her eyes with autism or something?” and Kelly McMenimen, a Lagunitas parent, said she “meditated on it a lot” before deciding not to vaccinate her son Tobias, 8, against even “deadly or deforming diseases.” She said she did not want “so many toxins” entering the slender body of a bright-eyed boy who loves math and geography. You’ll notice a common theme in these defenses—the brightness of or light in their children’s eyes. This is a direct reference to Jenny McCarthy’s narrative of the “light” leaving her son’s eyes after he was vaccinated. It’s used by parents who don’t want to say the word “autism” but want to imply that they’re scared their kid will become autistic (or something similar). Here’s what McCarthy said to Oprah in 2007: “Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.” Now consider the standard response from vaccine advocates to stuff like this—it’s always, without fail, “Vaccines don’t cause autism.” Because they don’t, right? They absolutely, scientifically do not cause autism. That’s a solid fact. But here’s what everyone gets wrong: regardless of whether or not vaccines cause autism, our entire conversation surrounding them is completely ableist. When those in the anti-vaccination movement treat autism as a calamity far worse than a debilitating disease or death, that is ableism. What we also need to recognize is that every time we respond to fear-mongering about vaccines and autism with the words, “don’t worry, vaccines don’t cause autism,” that is also ableist. Because instead of pointing out that, hey, autism and neurodiversity are far from the worst things that could happen to a parent, “vaccines don’t cause autism” falls into the same narrative as “vaccines cause autism”—both suggest that autism is this boogeyman that lives under our kids’ beds that could strike at any time. Even though telling people that vaccines don’t cause autism is factual, the way in which it’s said only validates people’s negative view of autism. Says Allison Garber, an autism activist whose most recently claim to fame is being blocked by Jenny McCarthy on Twitter, “The language from both sides of the vaccine camps is definitively ableist. What’s even more jarring is that neither side seems to ever want to invite someone who is, you know, actually autistic to the party. I guess that’s because it would be awkward if they were actually in the room when we were all talking about how somebody’s neurological makeup is a tragedy to be feared and avoided at all costs.” Instead of reassuring parents that vaccines don’t cause autism (which, again: factually true), why don’t we start refuting anti-vaccination advocates with the fact that autism isn’t a catastrophe. Why not start sending them links to blogs and articles written by people who actually have autism. Why not say something like, “it’s been proven that there’s no link between vaccines and autism, but I think it would be great for you to re-evaluate why you think so negatively of autism.” And for the love of Pete can we please stop talking about how autistic people have no light in their eyes or no soul or whatever. First of all, you’re confusing vampirism with autism. Second of all, how can you talk about real, living people like that? Would you tell Temple Grandin to her face that the “light” (whatever that even means) is missing from her eyes? If you went to a book reading by John Robison, would you greet him afterwards with the words “So, what’s it like not having a soul? Do you still have a reflection? Can you eat garlic? Do you sleep in a coffin?” Autistic people aren’t “gone.” Their brains function differently than neurotypical brains, which often leads to them becoming overwhelmed by outside stimuli in a way that other people might not. So, in a sense, they’re more present than many of us are—they’re bombarded by sights, sounds and smells that neurotypical people can ignore or dismiss. They are very much “here,” trying way harder than most to process what “here” is. So get out of here with your misinformed ideas about autistic people having no light in their eyes or no soul. Get out of here and maybe go meet an actual autistic person. At the end of the day, words matter and how we talk about issues matters. And when those of us who believe it’s important for children to be vaccinated keep pulling out “but vaccines don’t cause autism” without following it up with some kind of explanation that also autism isn’t a tragedy, we need to consider the impact our words might have. Because of course the end goal is to vaccinate every child eligible for vaccination, but we don’t need to throw autistic people under the bus to accomplish that goal. The debate about vaccination should be autism-inclusive, and that means re-evaluating the way we talk about autism and vaccines. Because while it’s great to raise a happy healthy kid, you can do that without turning them into an anti-autism bigot.

The anti-vax propaganda tactic of characterizing autism as “worse than death” is dehumanizing and false – voting neg against anti-vaccination is the first step to deconstructing ableism in society.

Raygender 15 – Raygender, social justice blogger that focuses on police brutality, racism, LGBTQ issues, and mental health issues, 2015 (“Ableism, Disability, and The Conversation About Vaccines: An Autistic Perspective”, Raygender, February 6, Available Online at https://raygender.wordpress.com/2015/02/06/ableism-disability-and-the-conversation-about-vaccines-an-autistic-perspective/, accessed 7/21/15, KM)
There’s been a lot of talk about vaccines lately, and how diseases that were once almost eradicated are starting to come back because unvaccinated children are being exposed, or exposing others, to viruses. I’m glad this issue is getting more attention. It’s something we need to talk about! Vaccines have genuinely improved society by preventing people from contracting some illnesses they could potentially die from. Now that people are avoiding them, some of those diseases are coming back, and putting people’s lives at risk. I would be even happier if the mainstream conversation reflected the conversation that’s been happening in the autistic community for years. That’s right — autistic people have been speaking out about vaccines ever since the anti-vaccination movement began. From the very beginning, the anti-vaccination movement has been an autism issue. You cannot talk about one without the other. People’s reasoning for avoiding vaccines stems from the idea that childhood vaccines cause autism, and that autism must be avoided at all costs. To leave this out is to skip over one of the many ways the anti-vaccination movement is hurting people. The anti-vaccination movement has its origins in the work of Andrew Wakefield — a former medical researcher who published a study in 1998 claiming that the measles vaccine was responsible for the supposed “autism epidemic.” No researchers could reproduce Wakefield’s claims — a sure sign in the scientific community that a theory is false — and in 2004, an investigation revealed that Wakefield had conflicts of interest and had committed misconduct. This included subjecting the children involved in his study to unnecessary, abusive medical procedures. Sadly, debunking Wakefield’s study was not enough to stem the tide of the anti-vaccination movement. The idea that childhood vaccines caused autism fits perfectly into people’s ideas about the so-called “autism epidemic.” It’s a fact that autism diagnoses are on the rise, but it’s not a fact that this is because of vaccines, or chemicals, or television, or smart phones, or anything else. In fact, the most likely “cause” is simply that doctors are getting better at diagnosing people. There’s nothing sinister behind it, and there’s certainly nothing sinister about autism itself — something else that autistic people have had a hard time convincing others of. Even if vaccines did cause autism — which, seriously, we have no actual proof that they do — why is that enough motivation to risk destroying herd immunity and creating a measles epidemic? You can die of measles; you can’t die of autism. The answer, of course, is ableism. People are afraid of disability. And it goes beyond just worrying that if disabled, they won’t be able to work or they’ll be excluded from society. People think disability is a fate worse than death, when really it’s just another aspect of human diversity. And this attitude of fear is extremely harmful. Just look at Jenny McCarthy and her organization Generation Rescue, who have led the anti-vaccine movement, at the cost of thousands of lives. Generation Rescue’s name refers to “rescuing” children from autism, or rescuing society from the “autism epidemic.” Autism isn’t something anyone needs to be “rescued” from; it is not holding children hostage, like another organization, Autism Speaks, has claimed. It is not depriving families of the “normal” child they feel they deserve to have, and it is not a danger to society. In fact, “rescuing” children from autism is far more dangerous. Therapies used to “treat” autism, like Applied Behavior Analysis, use the same principles as gay “conversion” therapy — in other words, the goal is to make the patient behave in socially acceptable ways, which means suppressing their own, natural ways of behaving — something that is best accomplished by abuse, and can lead to lifelong trauma. Parents have also been known to give their children bleach enemas, beat them, and “train” them like dogs, all in an attempt to “rescue” them from autism. Now, that this issue is hitting the mainstream, we have a unique opportunity to talk about autism and abliesm. The anti-vaccination movement is based on fear of autism. It is based on the idea that autistic children are soulless — that, in the words of one horrific advertisement, “you can’t die from autism, but you can’t really live with it either.” This attitude just creates even more fear. People with a range of disabilities are affected by the vaccination issue. People with vulnerable immune systems are put at risk, with the message that if they can’t survive without the aid of medical science, they’re somehow a drain on society. And autistic people, or anyone else with a condition that’s supposedly caused by vaccines, is told that they are soulless monsters, not even really alive, and that parents are right to do everything in their power to avoid having a child like them. Even well-intentioned pro-vaccine advocates have fallen into the trap of ableism. It’s very easy to ignore the deeper issues all together. The facts say vaccines don’t cause autism. So many people have assured parents that they have nothing to worry about; vaccines won’t cause their child to come down with a horrible disease. But autism isn’t a horrible disease. It isn’t monstrous or tragic. And as long as people think it is, and avoid speaking out against fear, autistic people will continue to suffer. Just as all disabled people suffer when people think our lives are tragic, and that we are burdens. I hope that the mainstream conversation on vaccines has room for these issues. Illnesses like those we vaccinate against in early childhood are terrible, and can affect anyone. They can kill. This is not preferable to autism. It is not preferable to the disabilities that might result from illnesses like polio or meningitis. Disabled people are better off alive because all people are better off alive. This should be the focus, because so many lives are being threatened by the anti-vaccine movement. People are at risk for dying from preventable diseases, and autistic people are at risk for dying at the hands of caretakers and parents who see them as a burden. My greatest hope is that we can eliminate these deaths completely if we stand together and remember that autism isn’t anything to be scared of.

Autism is not a “tragedy”, “burden”, or “crisis” – challenging the ableist logic of things like anti-vaccination is key to breaking down neurotypical constructions of disability that shape policies and cause violence.

Kurchak 15 – Sarah Kurchak, writer and autistic advocate, 2015 (“Autistic people are not tragedies. My life has value and joy”, The Guardian, April 30, Available Online at http://www.theguardian.com/commentisfree/2015/apr/30/autism-is-not-a-tragedy-take-it-from-me, accessed 7/21/15, KM)

The existence of autistic people like me is not a “tragedy”. Yet many autism awareness narratives insist it is because they prioritize the feelings of neurotypicals (non-autistic people) and dismisses the rest of us as little more than zombies. And when people buy into this idea, it actively hurts autistic people. When I was finally diagnosed with autism spectrum disorder six years ago, I wouldn’t shut up about it. In part, this was because I, like many autistics, tend to perseverate about the things that intensely fascinate me and, at that moment, there was nothing more fascinating to me than discovering that there was an explanation for all of my sensory sensitivities, social issues, repetitive behaviors and obsessive interests. I also believed in the importance of autism awareness. But once I started participating in awareness campaigns I found the same overly simplistic and fear-mongering message over and over again: autism is a “crisis”. According to the highly influential charity Autism Speaks (which doesn’t have a single autistic person on its board), autistic people are “missing” – we leave our family members “depleted. Mentally. Physically. And especially emotionally.” Defining our existences solely as a tragedy for non-autistic people is hurtful on a personal level. No one deserves to be told that they are nothing but a burden to the people who love them and everyone has the right to feel like their lives have value. But it also has troubling implications for public policy. If autism is only presented as an unequivocally terrible curse that must be “cured” and eliminated, then charities that are primarily focused on finding a cure – like Autism Speaks – will continue to receive the bulk of ASD-related funding and volunteer hours. Even if a cure is possible or preferable (both of which are arguable) these wild stabs at hunting down genetic bogeymen in the hopes of eliminating them in the future do nothing to improve the lives of the autistic people and their caregivers who are struggling with a scarcity of both resources and understanding right now. This line of thought also eclipses more nuanced discussions that might help to make life more manageable for the people who make up this so-called autism epidemic. If you spend time following hashtags like #ActuallyAutistic and the work of organizations like the Autistic Self Advocacy Network and the Autism Women’s Network, a cure is the last things on any of our minds. We want to talk about autism acceptance. We want people to understand that everyone on the spectrum, verbal or otherwise, has value and we want to work so that everyone has a voice, be it verbal, written, assisted or otherwise. We want to talk about which therapies and treatments are actually effective for us and which ones are detrimental to our well-being. And we want to know how we can create an environment in which autistic children are not at constant risk of wildly disproportionate punishment due to misunderstanding and fear. This is a particular concern with autistic children of color who face both ableism and racism, like 12-year-old Kayleb Moon-Robinson, who was charged with a felony after kicking a garbage can. Genuine awareness of autistic people, of our lives, our needs and our value, could greatly improve the lives of people both on and off the spectrum. Autistic people and our allies just need the rest of the world to stop spreading “autism awareness” long enough to actually listen and gain some.

The anti-vaccination movement is wrong – it’s not “vaccines versus autism”, but “vaccines versus ableism” – discussion now is key to reverse the ableist fallacy of anti-vaccination.

Kurchak 15 – Sarah Kurchak, writer and autistic advocate, 2015 (“I’m Autistic, And Believe Me, It’s A Lot Better Than Measles”, The Archipelago, February 6, Available Online at https://medium.com/the-archipelago/im-autistic-and-believe-me-its-a-lot-better-than-measles-78cb039f4bea, accessed 7/21/15, KM)

Vaccines don’t cause autism. But even if they did, is being like me really a fate worse than death? The autistic brain is not particularly good at understanding irony, and yet most people I’ve met on the autism spectrum have, over time, developed a pretty strong grasp of the concept. Many of us have even managed to teach ourselves how to wield it. I’ve begun to suspect that this is due to our constant hands-on experience. Having an autism spectrum disorder in an ableist world means that you’re constantly exposed to cruel irony. Most frequently, this comes in the form of neurotypical (i.e. non-autistic) people who tell you, incorrectly, that you can’t or don’t feel empathy like them, and then stubbornly refuse to care about your feelings when they claim that you’re lost, that you’re a burden, and that your life is a constant source of misery for you and everyone who loves you. There’s also my current favorite: parents who are willing to put the lives of countless human beings at risk because they’re so afraid that the mercury fairy will gives their kids a tragic case of autism if they vaccinate. Gotta protect the kids from not being able to feel empathy — who cares whether other children live or die? No matter what other lofty ideas of toxins and vaccine-related injury anti-vaxxers try to float around in their defense, that’s really what all of this is about: we’re facing a massive public health crisis because a disturbing number of people believe that autism is worse than illness or death. My neurology is the boogeyman behind a completely preventable plague in the making. The anti-vaccination movement is a particularly bitter issue for me because it doesn’t just dehumanize me as an autistic person; it also sets off two of my biggest triggers. Like many people on the spectrum, I don’t handle it well when people are 1) wrong, and 2) unfair. I’ve always struggled to be patient with people who are clearly and obstinately wrong. Most of my elementary school report cards contained some variation of “Sarah does not suffer fools gladly” and I can’t honestly say that I’ve made significant improvements in that arena since then. And people who refuse to vaccinate their children because they believe that vaccines cause autism are wrong. Andrew Wakefield’s infamous study that linked autism to the MMR vaccine, which first sparked anti-vax panic in 1998, was called into question in 2004 and fully retracted in 2010. Wakefield, who misrepresented or altered the subjects’ medical histories over the course of his research, lost his license that same year. No scientist has been able to reproduce his results. Major studies by The Journal of Pediatrics and the Institute of Medicine have failed to find any link between vaccines and autism. This should be more than enough to persuade a rational person that vaccines are safe — or at least as safe as any other simple medical procedure — but there is nothing even remotely rational about the anti-vaccination movement. It’s a dangerous and infuriating melange: poorly articulated fears of “toxins,” a failure to understand the difference between correlation and causation, misleading articles on truther websites, and conspiracy theories that would make Fox Mulder and The Lone Gunmen blush. I can’t even begin to wrap my head around anti-vaxxers’ reasoning. How can you find fault with every single bit of evidence that we have, from every single source, about the safety of vaccines? How can you continuously misread every single fact about their contents? How can you disregard the efficacy of vaccines in the fight against deadly and debilitating illnesses across the globe? If you can’t disregard it, how can you not care? If there really is a connection between autism and vaccines — which there’s not — and Big Pharma and/or The Man really are causing autism through vaccinations, what on earth do you think the end game of this conspiracy is? What upsets me more than the wrongness, though, is the dangerously unfair behavior that results from it. When someone believes asinine things about vaccines, it hurts humanity on an intellectual level. When they put those beliefs into action and refuse to vaccinate their children, it puts all of us at risk of serious illness and death. The current measles outbreak, which has now infected over 100 people in 14 states and is currently spreading into Canada, is a glaring example of what can happen when people put their (ignorant) personal whims against the well-being of their community. Through no fault of their own, unvaccinated children, immunocompromised people, babies too young to receive the vaccination and the occasional vaccinated person (no vaccine is 100 per cent because science is not magic) across the continent are suffering from an infection that was essentially eliminated from the U.S. in 2000. All because a sizable group of mostly-privileged parents have decided that reviving a group of life-threatening diseases and potentially inflicting them on their loved ones and neighbors is infinitely preferable to having an autistic child. I take the decision not to vaccinate personally. I’ve tried to have empathy for the other side, I’ve tried to tell myself that it’s none of my business, but I can’t and it is. Someone who refuses to vaccinate their children because they’re afraid of autism has made the decision that people like me are the worst possible thing that can happen to their family, and they’re putting everyone at risk because of it. I’ve been told by some anti-vaxxers that they don’t mean my brand of autism; they mean non-verbal autism, or as they are so fond of calling it, “profound autism.” I’m not about to take any solace in the idea that they’re willing to make exceptions for autistic people who can perform as neurotypical, or at least pose as little annoyance to neurotypicals as possible. That just means that I will cease to be of any value to these people if I am no longer able to pass as one of them, and that they see no value and no humanity in anyone who communicates or behaves differently from them. Tell me again who has the empathy problem? The best that I can muster in the anti-vaxxers’ defense is that they’re not 100 per cent responsible for the anti-autism sentiment fueling their movement. The idea that autism is an unparalleled tragedy didn’t happen in a vacuum. It came from the very people who claim to support us. Take Autism Speaks, for example. The world’s most prominent autism-related charity has a pretty cuddly exterior. Celebrities toss money at it. People wear blue things to help it raise awareness. It claims to help autistic people and their families. Why would anyone question its intentions? It would be absolutely absurd to run a charity for people you hate, after all. Right? But Autism Speaks isn’t really a charity for autistic people. It’s a charity for neurotypical people who have been afflicted with the horror of having autistic people in their lives. Since its inception in 2005, Autism Speaks has perpetuated the idea that people with autism are a burden and somehow “lost,” and they’ve refused to listen to any actual autistic people who disagree with their party line. It’s supported a number of dangerous and dubious treatments, like electroshock therapy and chelation, a lead poisoning treatment that has many risks and no proven benefit as an ASD cure, all in the name of making autistic people appear more neurotypical. Its official statements consistently refuse to acknowledge any humanity in autistic people, or recognize that their families experience anything other than abject misery. In its 2013 Call For Action, founder Suzanne Wright, who has an autistic grandson, wrote that families with an autistic member “are not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe. Working — most definitely — 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.” And honestly, that’s one of the less offensive things she’s said about us. This is far from true for the countless families who have spoken out against Autism Speaks. It’s certainly not the case for mine. We are all, last I checked, living. We work together to bridge our differences in communication, sensitivities, attributes, and detriments to go about our lives in a way that expands far beyond the moment-to-moment. We’re no more or less imperfect or tragic than the average family. We don’t even have measles. I have good days where my strange and intense interests give me a unique perspective in my writing and my focus helps me get it down on paper. I have bad days where I can’t ride public transit without having a panic attack and I have to leave the room when my husband chews food because I find the sound of it unbearable and overwhelming. I have stimmed to my heart’s content and I have hit myself. Throughout all but the worst of it — depression is a common comorbidity of autism, likely because living in the neurotypical world is often trying — I’ve been pretty sure that I am “living,” and better for it. Throughout all of it, my loved ones have preferred my autism to my possible illness or death, or the deaths of others. I’d say I was grateful, but really, this should be a given. Autism Speaks is currently urging parents to vaccinate their children, though it was funding and supporting vaccine-related research as recently as 2009. But it continues to spout the kind of anti-autism rhetoric that made people who aren’t so great with critical thinking so scared in the first place. I’m not sure what the cure is here. Anti-vaxxers are very dedicated to being wrong. As The New York Times’ Brendan Nyhan discovered last year, they’re more resistant to irrefutable facts than vaccinated kids are to preventable diseases. But I’m at least a little bit hopeful that renewed interest in anti-vaxxer rhetoric, spurred by the current measles outbreak, will inspire a more thorough discussion about autism like Anne Theriault’s and Jen Zoratti’s excellent work on the topic (full disclosure—I’m quoted in the latter piece)—and that this discussion will do some good. For starters, we could talk about people on the spectrum like we’re better than measles, like we’re human, or like we’re there at all. Long before the fear of autism threatened everybody’s lives and well-being via the anti-vaccination movement, it threatened the lives and well-being of autistic people through isolation, improper treatment, and even outright murder. Even if we can’t eliminate these deaths — and I hope to Temple Grandin that we can — the way that people respond to the current public health clusterfuck still offers us a chance to save lives.

We must actively reject ableism and confront abled privilege – ableism shapes our assumptions and understanding of the world, dehumanizing those lacking privilege.

Phillips 15 – Kiah Phillips, contributor to Respectfully Connected, a blog that focuses on ableism and emphasizes neurodiversity, 2015 (“So, What is Ableism?”, Respectfully Connected, February 27, Available Online at http://respectfullyconnected.blogspot.com/2015/02/so-what-is-ableism.html, accessed 7/21/15, KM)
Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners. Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309. When our boy was first diagnosed as autistic, I had never heard the term "Ableism". I have to be honest, I probably still didn't hear it until well beyond the first anniversary of that day. I had no idea of just how much this concept, this idea, this reality was going to coincide with our boy's life then - and to a lesser but still significant extent, our lives as parents too, for very different reasons of course. However, once my thinking shifted from the pathology perspective; common among most professional "experts" and vast numbers of parents, to the neurodiversity model, I began to recognise the degree to which the thinking of many neurotypical people revels in the inherent discrimination, prejudice and privilege of ableism. These same people would be aghast at comments containing racism, sexism or homophobia as but three examples, yet when it comes to ableism, somehow there is a collective societal blind spot - or so it would seem. So what is going on here? Could it really be that people simply do not know what ableism is? - at least in the sense that they don't see it as obviously as they would other forms of discrimination, or are people aware and as a society, we willfully turn our heads in ignorance the way we used to in relation to discrimination in other areas such as race or sexuality? In other words, is this an issue of recognition or willful ignorance? For me personally, I have to own it; I was painfully ignorant of the issues facing people with disabilities but I cannot ignore the fact that I also carried a privilege that I was not even aware of: I am neurotypical and in a society where (currently) the majority is neurotypical and all infrastructure and societal norms fit around that majority, which means I have advantages conferred upon me that I do not have to think about, hence - to some extent - my lack of awareness. That makes my life easier - and even possible, in some instances. These are things that a person with a different neurological make-up, such as autism, cannot take for granted. Every institution of society is based around a neurology that differs from theirs and this places them at an immediate disadvantage. You might think, well, autistic people should just try to fit in, or that society has a right to expect all people to conform to the socially acceptable ways of behaving, socially acceptable values or ideas of what a successful, "functioning" person looks like. If you do, either by accidental default or by willful ignorance, you are exhibiting ableism. Just as I used to, before my beautiful boy opened my eyes and tore open my mind and my heart. When was the last time someone insisted on using functioning labels in a conversation with you about a person who is autistic? How often have you heard "experts" claim that autistics must be able to pass as indistinguishable from their neurotypical peers? How often have you heard it said that autistics must not engage in self-stimulatory behaviour because it makes them stand out? What about repetitive actions or "hyper-focus on a specific interest"? I know that you'll have heard people tell you that this prevents the autistic person from functioning. I know that I have. But break it down......please; Functioning as what? Because as far as I understand it, an autistic whom is engaging in those self-regulatory actions, is functioning well as an autistic person, which is who they are, after all is said and done. But wait - the assumption is that the goal is to function as closely to neurotypical as possible, right? To fit into the society that is established around the normative values of it's majority? You see I have an issue with that right there; because that is ableism. There are many variations on this theme. I read commentary constantly where parents concern themselves that their autistic child may never marry and have children; that they may not achieve financial success (whatever that means) or have a career. Aside from the fact that many autistic people do, despite all obstacles, meet those measures of success, there are many people with a neurotypical neurology who do not. I wonder why there is a generally held assumption that an autistic person only meets with deemed success when they are able to pass as a neurotypical person or adopt the values of a society whose majority does not speak for them? The undercurrent of every conversation that involves autistic people needing to be fixed, to fit in, to be cured, to be avoided in the first place, to engage in normative behaviour, to not perseverate on specific interests, to change who they are, is underpinned by the ableist assumption that to be neurotypical is better, that neurological variance is "less than". Less than what? Let me try that another way, if you will: how would it sit with you if I said that women were less valuable than men? That Asian people were better than Europeans? That homosexual people should be forced to marry into heterosexual couplings? You see the nonsense - not to mention the outrage that these views would cause? Yet I can be told that my beautiful child should be everything that he is not and cannot ever be (without destroying himself in the process) - and scant few of my neurotypical brethren are here to pick up the mantle of outrage and demand change. I ask myself: Is it because they are willfully looking the other way? But you. I am hoping that you, you will stand with me.

Ableist Discourse bad

Discourse matters – the language of anti-vaccination proponents can and does hurt people with disability.

Marcotte 15 – Dawn Marcotte, creator and CEO of www.ASD-DR.com, an online searchable database to help autistic teens and young adults identify colleges that provide support services specifically for autistic students, 2015 (“Accidental Ableism”, Autism Daily Newscast, February 23, Available Online at http://www.autismdailynewscast.com/accidental-ableism/23452/dawnmarcotte/, accessed 7/21/15, KM)
It was not something I concerned myself with too much as I consider myself to be a pretty good person who doesn’t discriminate against anyone. I certainly never thought it would apply to my daughter. Then I read an article talking about the vaccine-causes-autism issue. This issue is in the forefront of news again, due to the recent outbreak of measles across the country. The article pointed out that most, if not all, of these articles were ableist because they talk about whether vaccines cause autism or not, as if autism is a disease. This concept never even occurred to me until I read this article. I can think of several times where I have left comments or written articles that used much the same language. For this I am sorry and can only hope that I have not offended anyone. More importantly the article got me thinking about how the use of language and social media can be so powerful. I don’t think most people really consider how the words they use can be interpreted in different ways, but in today’s web connected world, words are even more important. You don’t know who will read what you have written and more than likely you won’t ever have a chance to explain a word that someone else may find offensive. It is also important to remember that once you post something, it is out there forever. So all those families, friends and parents who post about the trials and triumphs of their children, it is important to stop and wonder how those same children will feel when they read it themselves. It doesn’t matter how old they are now – eventually they will see what is written. Will it make them happy it was posted or embarrassed and angry? It doesn’t matter if the post is well intentioned or not. Posting on Facebook asking the public to send birthday greetings may seem like a nice thing to do, but I often wonder if those parents have asked that child permission before they post. Does the child really want the world to know they don’t have any friends? Do they really want greetings from people who send them only because they feel sorry for them and will never hear from again? Do they even care about getting birthday greetings? or is the parent assuming a feeling the child doesn’t actually have? It seems that as parents we tend to make a lot of assumptions, myself included, about how our children feel or think – without asking them. Our priorities are not always theirs and it is time to step back and take an honest look at how we behave online. As a freelance writer I tend to share a lot of stories about our experience with autism and raising an autistic daughter. I never really asked her if it was okay to share these stories and just assumed she wouldn’t care because I keep her anonymous. However I am making a commitment that from now on I will check with her first, before sharing anything online that refers to her or her experience. I am going to work hard to remember that everyone deserves respect. If I post something that I would find embarrassing if it were about me then I just shouldn’t post it. I think understanding that ableism doesn’t just apply to ‘other‘ people, but to everyone is an important step in autism awareness. I only hope that other parents will take note and start to think more about what they post.

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