A COVID Cough?

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Rep. Glenn Grothman (R-WI) apparently believes in the discredited notion.

This is @RepGrothman *today* at the Wisconsin Republican convention (which was held in-person) pic.twitter.com/MnsVlJryLE

— Aaron Rupar (@atrupar) July 12, 2020

In 2017, Jeff Spitzer-Resnick blogged about a visit to Grothman's office::

Sure enough, almost immediately, Rep. Grothman walked into his office where we were already sitting down with his legislative assistant, and recognized me and said:

I have to ask you a question. Do you believe that vaccines cause autism?

While I could not have predicted exactly what outrageous question Rep. Grothman would ask me, I had anticipated that he would ask an outrageous question. I could have demurred and said that this was not what we had come to talk to him about as it was not one of our issues, but my past experience with Rep. Grothman was that he would not give up until he got an answer to his question. So, I replied by saying:

No, I do not believe they cause autism.

Of course that did not satisfy Rep. Grothman, so he persisted by asking:

How do you KNOW they don’t?

So, I replied:

You asked me if I believe they cause autism. I do not BELIEVE they cause autism because science has not demonstrated that they do.

I then proceeded to put him in his place by telling him the story of my brother who died from a pertussis vaccine in 1966. We know this because science proved it and Congress passed a vaccine compensation program for such medical mistakes. I further informed him that fortunately our son was born after scientists developed a dead virus vaccine which is safe so we could give it to him. I closed with informing him that people who do not give their children vaccines are bringing back diseases into our community and they are a public health menace.

By the time I finished, Rep. Grothman recognized that he was not going to win this argument and our meeting was able to continue in the manner that we desired by discussing the issues that we came to talk about. The lesson, of course, is that well prepared advocates will not get thrown off by those in power who choose to pursue an irrelevant agenda. By speaking truth to power, I was able to provide both personal and fact based information to Rep. Grothman and steer the meeting back to what we came to talk about.

Driver's License Legislation in Louisiana

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly. Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

At.myarklamiss.com/KTVE-TV, Mya Hudgins reports:

Two local women who work for the Autism Society of North Louisiana have spent the last few months working with representative Francis Thompson on a new bill that will protect those on the Autism Spectrum. House bill 317 will allow those with autism to get a symbol placed on their driver’s license, so police and first responders will know immediately that the driver has Autism. The flashing lights, sirens, and not knowing who the officer is could trigger a sensory overload for those on the spectrum.

“Sometimes those on the autism spectrum may have that fight or flight, they may walk off if you are trying to talk to them, they may not have the communication skills, and they may not be able to talk to you,” said Dr. Dawn Stanfield, co-founder of Badge Buddies.

In addition, the bill requires police officers to take a course that will train them on interacting with those on the spectrum. House Bill 317 is a tool for both the driver and the police officer.

“If they have this training and they understand the communication differences and some of the behavior differences with individuals with autism, then they may not misinterpret some of that behavior as being disrespectful or non-compliant,” said Amber Boykin, President of Autism Society of North Louisiana.
...

The bill will go into effect on August 1st of this year. The Autism Society of North Louisiana will have a summer institute training later this month. For more information about the Autism Society Of North Louisiana, click here. To read the entire HB317, click here.

Invisible Disabilities: Hidden Pain

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Andrew Solomon at NYT:

The word “disability” evokes images of ramps, lower-positioned urinals, grab bars and other allowances in our architectural landscape. But an untold number of people have disabilities — from A.D.H.D. to addictive disorder to lupus — that aren’t necessarily helped by a reserved parking spot. A person who walks with a limp but uses no physical support may be jostled on the street like anyone else. An autistic person, or a person with a mental illness, will often be disdained or even assailed for peculiar or antisocial behavior.

...
The Center for Disability Rights (C.D.R.) lists the following invisible disabilities: “learning differences, deafness, autism, prosthetics, Traumatic Brain Injury (T.B.I.), mental health disabilities, Usher syndrome, bipolar disorder, diabetes, A.D.D./A.D.H.D., fibromyalgia, arthritis, Alzheimer’s, anxiety, sleep disorder, Crohn’s disease, and many more.” Post-traumatic stress disorder, epilepsy, multiple sclerosis and cystic fibrosis are other invisible disabilities. The C.D.R. cautions, “Unless it is disclosed, no one knows for sure whether someone has an invisible disability.”
...
Societal reactions to hidden disabilities can be harsh. Some parents of autistic children say that it is difficult to be in public with a neurotypical-seeming child who suddenly experiences a huge meltdown because of apparent sensory overload. People stop and stare, offer unsolicited advice or reprimand the parents for their presumed abuse or indifference in the face of their child’s outrageous behavior. People with schizophrenia have been spared some opprobrium by the invention of cellphones and earbuds: It can be hard to tell on the street who is engaged in imaginary conversation with nonexistent people. Yet while people with untreated psychoses are seldom dangerous, their behavior can be erratic and jarring, and because it is not always understood as being rooted in a mental health condition, it often provokes unpleasantness, even violence.

...

Students granted extra time to take a test may be met by the cynicism of peers; some may choose not to avail themselves of a reasonable accommodation because they fear being stigmatized. Working people who require specific environmental conditions — an autistic person, for example, may need an office without florescent lighting — may attract suspicion and even mockery.

Wayne Connell founded the Invisible Disabilities Association in 1996 after his wife was diagnosed with multiple sclerosis and late Lyme disease. He was frustrated by the outside perception that she didn’t have a real infirmity.

Feds Charge Bleach Quacks

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

Meagan Flynn at WP:

In April, when President Trump mused whether injecting patients with disinfectant could kill the novel coronavirus, perhaps no one was more thrilled about the suggestion than Mark Grenon.

Grenon runs a fake church with his sons in Florida that sells people a life-threatening toxic bleach product he calls the Miracle Mineral Solution (MMS), federal officials say, which he fraudulently claims cures everything from covid-19 to cancer.

“Trump has got the MMS and all the info!!! Things are happening folks!” Grenon, 62, wrote on Facebook on April 24, linking to Trump’s comments. “Lord help others to see the Truth!”

Grenon had made $500,000 in 2019 alone selling his solutions to thousands of vulnerable, sick people across the country, according to the Justice Department, even though the Food and Drug Administration had warned for years that people could die if they drank MMS products, which are essentially bleach.

From the U.S. Attorney for the Southern District of Florida:

Federal prosecutors in Miami have charged four Florida residents who allegedly marketed “Miracle Mineral Solution,” a toxic bleach, as a cure for COVID-19, with conspiracy to defraud the United States, conspiracy to violate the Federal Food, Drug and Cosmetic Act, and criminal contempt.

Ariana Fajardo Orshan, U.S. Attorney for the Southern District of Florida, and Catherine Hermsen, Assistant Commissioner of the FDA’s Office of Criminal Investigations, made the announcement.

According to the criminal complaint affidavit, Mark Grenon, 62, and his sons, Jonathan Grenon, 34, Jordan Grenon, 26, and Joseph Grenon, 32, all of Bradenton, Florida, manufacture, promote, and sell Miracle Mineral Solution (“MMS”), a chemical solution containing sodium chlorite and water. The Grenons allegedly directed their customers to ingest MMS orally, which causes the solution to become chlorine dioxide, a powerful bleach, typically used for industrial water treatment or bleaching textiles, pulp, and paper. FDA has received reports of people requiring hospitalizations, developing life-threatening conditions, and dying after drinking MMS.

...

The affidavit also alleges that, before marketing MMS as a cure for COVID-19, the Grenons marketed MMS as a miracle cure-all for dozens of other serious diseases and disorders, including cancer, Alzheimer’s, autism, multiple sclerosis, and HIV/AIDS, even though the FDA had not approved MMS for any use. The Grenons allegedly sold tens of thousands of bottles of MMS nationwide, including to consumers throughout South Florida. They sold this dangerous product under the guise of Genesis II Church of Health and Healing (“Genesis”), an entity they allegedly created in an attempt to avoid government regulation of MMS. According to the charging documents, Genesis’ own websites describe Genesis as a “non-religious church,” and Defendant Mark Grenon, the co-founder of Genesis, has repeatedly acknowledged that Genesis “has nothing to do with religion,” and that he founded Genesis to “legalize the use of MMS” and avoid “going [ ] to jail.”
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Related court documents and information may be found on the website of the District Court for the Southern District of Florida at www.flsd.uscourts.gov or at http://pacer.flsd.uscourts.gov, under case number 20-MJ-03050.

Progress on Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

Paul S. Carbone and colleagues have an article at Pediatrics titled "Primary Care Autism Screening and Later Autism Diagnosis"

From the abstract:

Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92–0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09–0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6–14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT’s sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns.

From the article:

Previous estimates of ASD screening have varied significantly (between 17% and 81%) and relied on physician report of “usual practice.”6,16 Our study, along with 2 recent studies, adds to understanding of ASD screening because estimates are based on data from actual visits rather than physician recall and indicates that, although ASD screening is far from universal, a high proportion of children are screened at least once.10,11
With our study, we provide important insight into disparities in ASD screening; researchers in previous studies suggested that ASD screening in primary care reduces racial and ethnic disparities in ASD identification and age of diagnosis.17 Hispanic children in our cohort were less likely to be screened compared with non-Hispanic white children, a finding supported by one previous study.11 We also found family physicians rarely administered ASD screening tools. The American Academy of Family Physicians does not recommend universal ASD screening, which may explain differences in screening between pediatricians and family physicians.18 No previous studies have had estimated rates of ASD screening among family physicians, although researchers of one qualitative study of a small group of family physicians found that, rather than screening, participants relied on developmental surveillance to identify children with ASD.19 Given that family physicians provide 16% to 21% of pediatric care, this new finding uncovers an opportunity to further increase ASD screening rates in the United States.20

...
Our results suggest progress toward universal ASD screening in primary care practices. Still, only half of children in our study were screened at both 18- and 24-month visits, suggesting further work to be done to encourage providers to complete screens as recommended, with more efforts to screen Hispanic children. Further advocacy and education are needed to encourage family physicians to screen for ASD. More resources are needed for implementing ASD screening at the practice and health care system level, with particular attention to administering ASD screening tools with fidelity, prompt referral of children who are found to be at-risk, and increasing the availability of ASD diagnostic providers to facilitate prompt ASD evaluations.

National Disability Voter Registration Week

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

Why NDVRW? 

Every year, the REV UP Campaign coordinates National Disability Voter Registration Week (NDVRW) to increase the political power of people with disabilities by sharing resources and getting folks registered to vote. This year, NDVRW is July 13-17. With an estimated 35 million people with disabilities eligible to vote in 2020, we invite state and local organizations to participate in NDVRW in order to raise the disability voice and civic participation across the country!

COVID-19 Update: Although some states are slowly opening up, we are focusing on supporting the disability vote through digital organizing techniques throughout NDVRW!

Getting Involved in NDVRW

Share our Online Voter Registration Portal! Direct folks to AAPD’s custom registration portal at weall.vote/aapd, powered by When We All Vote, where they can register to vote in just a few minutes.

Host a Virtual Event! Host a virtual event to help voters in your state understand the rules, disability voting rights, voting options, safety-protocols, and key dates for the 2020 elections.

Organizing Virtual Text-banking! AAPD has partnered with When We All Vote to use OutVote, an app that helps individuals to use texting to get out the vote among their friends and family. Check out instructions for using OutVote in our NDVRW 2020 toolkit.

Activate your Social Media! Use the power and reach of social media to share our online voter registration portal weall.vote/aapd, motivate your network to register and vote, and inform voters on your state’s election rules and dates.
Use our NDVRW 2020 Toolkit! Our Toolkit provides key resources and info to help you engage with NDVRW!

Access the NDVRW 2020 Materials

NDVRW Resources & Tools

Getting people with disabilities registered to vote is the first step to increasing the political power of people with disabilities. Below are links to tools and resources to help you get involved in NDVRW 2020:

NDVRW Signup Form If you are planning voter registration events or other activities, please keep the REV UP Campaign updated on your efforts!
NDVRW 2020 Toolkit The NDVRW Toolkit includes a guide on how to organize virtual voter registration events, sample social media posts and graphics, and more.
NDVRW Digital Organizing Training On June 10th, AAPD and When We All Vote hosted a training on how to get folks registered through digital organizing strategies.
Online Voter Registration Portal (weall.vote/aapd) Share this online voter registration on social media, on your websites, in your email signature, in newsletters, and more.
NDVRW Press Release Template Use this press release template to share your involvement in NDVRW 2020 in your state and communities.
NDVRW Social Media Graphics Especially during COVID-19, Social Media is an incredibly powerful tool for encouraging people to register and vote.
NDVRW Partners Supporting Organizations will have their name and logo listed on the REV UP website to show the vast support behind the Campaign.
NDVRW Flyer Use this flyer to share information about NDVRW with your partners.
NDVRW Spanish Materials*

*Special thanks to María Vicky Díaz, Dr. Sara M. Acevedo, and Dr. Federico Waitoller with the National Coalition for Latinxs with Disabilities/Coalición Nacional para Latinxs con Discapacidades (CNLD), and Laura Marquez from Paso Del Norte Children’s Development Center for providing Spanish translation.

Additional Ways to Participate in National Disability Voter Registration Week
Write letters to the editor or Op-Eds and engage local radio or TV stations on the growing efforts by the disability community. Check out The Op-Ed Project for tips on writing a compelling Op-Ed!

Organize a candidate town hall event or distribute candidate questionnaires to engage candidates with people with disabilities in your community. As a nonpartisan 501(c)(3) nonprofit organization you must send an invitation to all candidates. Nonprofit VOTE offers additional resources and guides on staying nonpartisan.

Connect with other disability rights and voting rights organizations in your area to partner on events and initiatives during NDVRW.

Ask your Governor, Mayor, City Council, County Commissioner, or State Representative to issue a proclamation declaring July 13-17, 2020, National Disability Voter Registration Week. Find a draft Proclamation here and send any Proclamations you receive to programs@aapd.com!

Find out how other organizations are engaging in NDVRW on our State Resources and Events Page.

Resources from Previous NDVRW’s

2019 REV UP National Organizing Call Recap2018 REV UP National Organizing Call Recap2018 Joint Statement of Support from Senators Dole and Harkin2018 REV UP Graphics

Antivaxxers Go Global

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Rebecca Speare-Cole at The Evening Standard:

Nearly one in six Britons will refuse a coronavirus vaccine if and when one becomes available in the UK, according to a recent survey.

The findings come amid a significant rise in anti-vaccination sentiment on social media.

In a survey conducted by YouGov on behalf of research group Centre for Countering Digital Hate (CCDH), only 6 per cent of people polled said they would definitely not get vaccinated.

A further 10 per cent also said they would “probably not”, meaning at least 16 per cent are not open to getting inoculated against Covid-19.

Loveday Morris and William Glucroft at WP:

Germany already had a fervent anti-vaxx movement, reflecting a historic skepticism of government control and an affinity for alternative medicine. [You-know-who was big on alternative medicine. -- ed.] Now, health experts have warned that even if a coronavirus vaccine gets approval, refusals could open the way to a resurgence while threatening efforts to keep other preventable diseases in check.

“With such a bad pandemic, there were people that said it would make anti-vaxxers wake up and see that vaccines are important,” said Heidi Larson, director of the London-based Vaccine Confidence Project. “But it’s actually done the opposite.”

Anti-vaxx groups have become highly “active and aggressive,” she said. “I think we are in a vulnerable spot right now.”

In Germany, conspiracy theories over a vaccine abound. Attila Hildmann, a vegan chef, has become one of the leading voices of the resistance, accusing the health minister of promoting a surveillance state and forced-vaccination program at the behest of Bill Gates.

...
Surveys of Germany conducted by the University of Erfurt found that in late June, 64 percent of respondents said they would be willing to get a hypothetical coronavirus vaccine — down from 79 percent in mid-April. The notion of mandatory vaccination was rejected by 38 percent of respondents.

The Australian Broadcasting Corporation:

With some Victorians refusing COVID-19 testing, it has become more important than ever to counter online misinformation, which may be influencing communities in virus hot spots.

In one Facebook post spotted by Fact Check this week, a slick, shareable infographic posted by a newly-created Facebook page claims there is "no evidence" that COVID-19 tests used in Australia are accurate. The post, shared by Friends of Truth, also states they have not been safety tested and are "unapproved".

Reuters:

Anti-vaccine protesters took to the streets in Johannesburg on Wednesday to voice their concern over Africa’s first human trials for a potential coronavirus vaccine.

Last Wednesday, the University of the Witwatersrand in partnership with Oxford University rolled out South Africa’s first clinical trial, which will consist of 2,000 volunteers.

The involvement of South Africa in vaccine trials is intended to ensure the continent will have access to an affordable vaccine and not be left at the back of the queue.

About 50 people held protests at the University of the Witwatersrand in Johannesburg, saying they did not want Africans to be used as guinea pigs, reflecting concerns among some on the continent over testing drugs on people who do not understand the risks.

At The Washington Post, Adam Taylor reports on the earlier measles outbreak in Samoa.

Most States Don't Meet IDEA Requirements

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

During the 2018-19 academic year, 21 states met the requirements of the Individuals with Disabilities Education Act for students ages 3 to 21.

From the Department of Education:

The U.S. Department of Education’s Office of Special Education and Rehabilitative Services released State determinations on implementation of the Individuals with Disabilities Education Act (IDEA) for Part B and Part C for fiscal year 2018. The 2004 Amendments to the IDEA require each State to develop a State Performance Plan (SPP) and Annual Performance Report (APR) that evaluates the State’s efforts to implement the requirements and purposes of the IDEA, and describes how the State will improve its implementation. The Part B SPP/APR and Part C SPP/APR include Indicators that measure child and family results, and other indicators that measure compliance with the requirements of the IDEA. Since 2015, the Part B SPP/APR and Part C SPP/APR have included a State Systemic Improvement Plan through which each State focuses its efforts on improving a State-selected child or family outcome.

...

Following is a list of each State’s performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:

 MEETS REQUIREMENTS Arkansas Florida Georgia Illinois Kansas Kentucky Maine Massachusetts Minnesota Missouri New Hampshire New Jersey North Carolina North Dakota Oklahoma Pennsylvania Republic of the Marshall Islands South Dakota Virginia West Virginia Wisconsin Wyoming

NEEDS ASSISTANCE (one year) Arizona Commonwealth of Northern Mariana Islands Connecticut Indiana Montana Nebraska Ohio

NEEDS ASSISTANCE (two or more consecutive years) Alabama Alaska American Samoa District of Columbia California Colorado Delaware Federated States of Micronesia Guam Hawaii Iowa Idaho Louisiana Maryland Michigan Mississippi New Mexico Nevada Oregon Puerto Rico Rhode Island South Carolina Tennessee Texas Utah Washington

NEEDS INTERVENTION (one year) New York Virgin Islands Vermont

NEEDS INTERVENTION (three years) Palau

NEEDS INTERVENTION (nine consecutive years) Bureau of Indian Education

Race, Autism, and the Police

In The Politics of Autism, I discuss interactions between first responders and autistic people. 

Autistic people may have poor eye contact or engage in repetitive behaviors, which may strike police officers as suspicious. They also might be slow to react to police commands, which can cause a routine stop to spin out of control. In Greenville, South Carolina, one news account tells of an autistic man named Tario Anderson: “Officers said they saw Anderson walking on the sidewalk and tried him to question him. They said when they put a spotlight on Anderson, he put his hands in his pockets, started walking the other way and eventually started running from them. He was shocked with a Taser and arrested because he didn’t follow the officers’ commands.”[i] Anderson is also African American, which adds another dimension to the story. In the wake of incidents in which African Americans had died at the hands of white police officers, one father wrote of his autistic son: “What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?”[ii]

---

[i] Tim Waller, “Arrest of Autistic Man Prompts Call for Police Training,” WYFF, January 2, 2015. Online: http://www.wyff4.com/news/Arrest-of-autistic-man-prompts-call-for-police-training/30491078.[ii] David Dennis, Jr., “My Son Is Black. With Autism. And I’m Scared Of What The Police Will Do To Him,” Medium, December 4, 2014. Online: .https://medium.com/@DavidDWrites/my-son-is-black-with-autism-and-im-scared-of-what-the-police-will-do-to-him-1af15a203d57.

Jackie Spinner at WP:

I only knew that being different and black in America means that my son is vulnerable if stopped by police. A 2016 report, analyzing incidents from 2013 to 2015, found that nearly half the people killed by police had some sort of disability. A 2019 study of police-involved deaths found that 1 in every 1,000 black men is at risk of being killed by law enforcement.


My son’s behavior can be unpredictable. He doesn’t read social cues, and he doesn’t really understand authority. When he makes a mistake, he often starts shouting. After he calms down, he always apologizes — almost immediately — for “causing a little bit of trouble.”

I took my son to the police station as a kindergartner because I wanted officers to understand more about autism and how he might react if they confronted him. Autistic people may be extra sensitive to light, sound and touch, or have difficulty following commands — especially if they are yelled. So to officers, their behavior can appear suspicious or aggressive. Confrontations between police and people with autism often escalate quickly. Police need better, and mandatory, training about people who are “different,” people like McClain or my son. Some departments use virtual reality programs to simulate interactions with someone who is autistic. A Florida-based organization that certifies theme parks as autism-friendly also provides training for first responders.

A post from 2014:

A number of posts have discussed encounters between police and ASD people. The Ferguson shooting and the Garner incident in New York have many African American parents on edge. At Medium, David Dennis, Jr. writes:

Just this week, one of our therapists sent a behavioral plan for Langston, saying that if he didn’t follow spoken instructions then we should physically guide him to do what we want from him. But his therapists are White. And as incredible and helpful as they’ve been, they don’t live with the reality that we do. Our son needs to know how to follow verbal instructions because if he doesn’t, a cop will find that as justification for ending my boy’s life. While we have to modify our language and communication to better convey our needs to our son and build his social skills, him knowing how follow explicit police instructions is non-negotiable. It’s life and death. I need him to know these things.

I keep thinking about what would happen if a cop is wearing gloves and puts his hands on my son. And my son pulls away because the texture of the gloves bother him. Or if my son just doesn’t like being touched by strangers. Or doesn’t react well when people point or raise their voices at him. Right now, the best way to get Langston to follow instructions is to get at eye level with him and explain very calmly what we need from him. What if that’ll always be the best way to communicate with him and a cop sees my son’s inability to process orders as an act of disobedience. What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?

HHS Does Not Require Congregate Setting to Report COVID Data

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

From the American Civil Liberties Union:

It took the Department of Health and Human Services (HHS) months after declaring COVID-19 a national emergency to start requiring nursing homes to report deaths and infections despite ample evidence that these facilities were at high risk. Even now, nursing homes are only required to report data from May 8 onward. HHS doesn’t require other congregate settings for people with disabilities, such as psychiatric homes, to report at all. This lack of transparency, in addition to the government’s systemic mismanagement of nursing homes and other congregate settings, has helped create the crisis we see today.

...
People with disabilities and the people who work with them deserve to be counted. States can and should modify current policies to collect and publicize vital data while maintaining privacy standards. Last week, the ACLU filed a petition calling on HHS to do its job to address this crisis — and its job includes collecting and reporting full data from facilities that receive Medicaid or Medicare dollars.

 

Anti-vaxxers and Anti-maskers Are a Menace

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Mackenzie Mays at Politico:

“Anti-vaxxers are morphing into the anti-anything movement. It’s clear to me that some of them are going to have their children show up to schools without masks to prove their point and poke the bear,” California Assembly Education Chair Patrick O’Donnell (D-Long Beach) said in an interview. “I don't know what authority schools will have.”

At a June legislative hearing in Sacramento on school reopening, parents wore shirts that said “Make pharma liable again” and “I don’t want a flu shot!” They voiced concerns about unfounded impacts of masks on children being able to breathe and the potential for a Covid-19 vaccine requirement down the road.

Christina Hildebrand, president and founder of A Voice for Choice, a California organization that opposes childhood vaccine requirements, said parents are against mask rules in school because of potential for detrimental social-emotional and educational impacts, like an “ingrained fear of contagion" and an inability to socialize.

...
Anti-vaccine activists joined conservatives and small business owners in protests over stay-at-home orders designed to curb the spread of the virus. They have also been involved in the harassment of public health officials whose job is to enforce those orders.

Despite no proof of any serious harm caused by masks for the general public, that narrative has continued in the form of arguments for constitutional rights across the nation. Footage of a public hearing regarding a mask mandate in Florida went viral last week after Palm Beach County residents argued that masks are “killing people.”

Invisible Disabilities and Policing the Boundaries

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Andrew Pulrang at Forbes:

Deciding who is and isn’t disabled, who does and doesn’t deserve accommodation, is complicated. Most efforts to distinguish fakers from “real” disabled people usually do more harm than good.

There is sometimes real reason for skepticism. One of the newest weapons in the ongoing politicization of Covid-19 is the trend of people seeking moral and legal cover for their refusal to wear a face mask, by claiming that they can’t wear them because of an underlying health condition or disability.
...
At the same time, disabled people also know what it’s like to have our disabilities doubted, our claims questioned, and our need for accommodations dismissed. We also know the humiliation of being diagnosed on the fly, based only on our appearance and bystanders’ assumptions. Sometimes we even do it to each other, casting disdain on people with disabilities different from our own.

One of the most common forms of everyday ableism, and one of the worst impulses within the disability community itself, is the instinct ... for some even the passion … for guarding the boundaries of disability. This tendency is heavily fed by sensationalist news, entertainment, and social media. Stories with nothing to them at all, and those with a kernel of truth but blown out of proportion, are repeatedly pressed into a toxic narrative of disability and dishonesty.

COVID-19 and Quality of Life

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of ventilators.

AMA Journal of Ethics, Ethics Talk Podcast Transcript - Disability Community Perspectives on COVID-19 Episode: Disability Community Perspectives on COVID-19 Host: Tim Hoff Guests: Alice Wong and Joe Stramondo, PhD

HOFF: The criteria according to which scare resource allocation decisions should be made almost always include a reference to “quality of life.” Because quality of life is subjective, however, and because we’re so often wrong, as the data suggests, about how we judge other people’s satisfaction with their own lives, quality of life-based criteria can be hard to apply uniformly and equitably and justly. Many have argued in various ways that using quality of life as a criterion is the first step on the slide down the slippery slope to eugenics, and there are very good reasons to take the merits of these arguments seriously. In fact, at least some parts of the federal government seem to be doing so. For example, the Office of Civil Rights in the U.S. Department of Health and Human Services reminds us—and I’m just going to quote this here for the sake of clarity—that, “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances based on the best available objective medical evidence.”

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WONG: And you know, I think, again, when we think about quality of life, I think all of us need to really question and unpack that term. Because I think for a lot of people, maybe listeners of your podcast, may think that quality of life means a life that’s without suffering or pain or without impairment or one that is independent. And you know, there’s a lot of values that are underlying there of what we consider normative bodies and functioning. And I think so much of this flies in the face of the huge range of human variation and the way that people thrive and adapt with the bodies we have and with the environments that we’re in. And we also can’t separate what’s different about our bodies and the society that we live in, the communities that we’re a part of. I believe that if people had access to the supports and technology that they need, and if people are treated with respect and accepted as they are, quality of life would look very different from the very strictly pathological lens.

STRAMONDO: I think that Alice is spot on in her discussion of quality of life and sort of the intersection between disability and one’s environment as being sort of the thing that determines quality of life. It’s not just about the presence or absence of disability itself. But looking at the language used in the complaint, I do have something of a concern in that it’s prohibiting explicit kinds of discrimination that might be sort of written into guidelines. But the fact of the matter is, a lot of times, the discrimination that might be going on when you’re talking about triage isn’t this overt, right? And so, that’s my real worry here. For instance, the best available medical evidence is what we’re supposed to make the determination based on. Well, the problem with language around the best available medical evidence is that a lot of times, people smuggle in quality of life considerations by talking about health, right, in that they equate quality of life with health, right?

Alice was just talking about how there’s this assumption that you need certain things to be part of your life in order to have quality of life. And for many, many people, health is one of those things. And so, when you write guidelines that direct physicians and triage committees to look at the best available medical evidence, that’s a vague term, right? That’s a very, very vague set of terms. Does this allow a triage committee or a state writing a set of guidelines to consider someone’s health status when considering whether or not they get life-saving treatment? And that’s, in some circumstances or by some interpretations, a real problem. If you are talking about health status in a way that what you mean is well, I’m going to consider how responsive this person will be to this treatment and whether or not this treatment will be futile for this person, then of course, that’s definitely some objective medical evidence that you want to consider when doing triage. But if what you’re saying when you talk about health status is something more along the lines of well, I’m going to prioritize this person who, after the treatment, will be healthier than this other patient who still will be disabled and unhealthy after the treatment, then that’s just sort of talking about quality of life considerations just using different words.