Lessons for the Day of Remembrance in the COVID19 era

3 Apr

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.

It’s April. For some it’s “autism awareness month”. For others, we remember autistics and other people with disabilities who have been killed by parents or other caregivers.

It’s also April, the second month of “shelter in place” as the COVID19 pandemic brings the world to a halt.

There are two things which scare me more than anything else: losing one of my family and myself dying and not being here to provide for and protect my family. I’ve had to face these fears multiple times in the past. I’ve spent nights wondering if every text I got would be from my wife, who was at the hospital with one kid, telling me that kid had not made it. I spent a day with the misdiagnosis of a huge aneurysm in my brain. Just to name two experiences.

And now I face those fears again. I’m not very old, but old enough to be at risk. I look at my family and wonder about other risk factors. And I live in fear.

Let me focus on my autistic kid for now. It’s one thing in times of relative safety and security to say, “This kid is my whole world” (as are each an every one of my family). But when one faces the very real chance that in a year or two one or both of us may be gone, it gets very real, as they say. And as I face that reality, let me say a few truths:

My kid is not a “burden”. I don’t want that “burden” lifted by one or the other passing.

My kid is a joy. Sure, I want to live as long as I can to be there to support my kid. But I want to live as long as I can to spend time with my kid.

I’ve “walked in the shoes” of the parents who have killed their kids. I spend my life with a kid who is disabled, autistic, and in need of a very high level of support. I can not and I will not forgive or forget those who chose to kill their kids. I will forgive and support people who realize they can not handle the life they have and decide to let someone else take up the responsibility. I’ve traded emails with family members of murdered autistic kids, family members who would have loved to care for those kids. They walked in the very shoes of those who chose to murder. They cared for the same exact kids.

Let me put this more direct:
Everyone is stressed right now. If you think you are at your own limits, find someone to take over. Call family. Call social services. Call someone. Please.


By Matt Carey

WTF Republicans?

23 Mar

Both houses of Congress are working furiously on bills to stimulate the economy following the COVID-19 slowdown. Which is a good thing. But, politicians are politicians and they can’t seem to “waste a good crisis” (as the saying goes).

From the Washington Post: The GOP just smuggled another awful provision into the stimulus

According to language in the bill forwarded to me by a senior Senate Democratic aide, this provision excludes “nonprofits receiving Medicaid expenditures,” which would not be eligible for those loans.

This language has been interpreted in some quarters as an effort to deny funding to Planned Parenthood, a longtime GOP target. But Democratic aides think the language means a lot more than this.

Specifically, Democratic aides believe this language would exclude from eligibility for this financial assistance a big range of other nonprofits that get Medicaid funding, such as home and community-based disability providers; community-based nursing homes, mental health providers and health centers; group homes for the disabled; and even rape crisis centers.

Great. Nonprofits serving people with disabilities would be excluded from this part of the stimulus. Why? Why Republicans, why?


By Matt Carey

What “flattening the curve” means to my family

19 Mar

We hear a lot about “flattening the curve” these days. Here’s what this means to me (click to enlarge):

If hospitals are overwhelmed, my kid will not be high priority. My kid is disabled. If there are a limited number of ICU beds, for example, my kid very likely won’t get one.

So, thank you to everyone who is helping out. Everyone who is taking this seriously. It’s very, very tough, I know. But this is literally life and death for people like my kid.

By Matt Carey

More advice for the vaccine-skeptic community: just lie low right now.

13 Mar

I just finished writing my previous article a few minutes ago and I thought I’d check out my go-to site for bad information about health and autism:the age of autism blog.

Here’s the thing–right now people are focused on health and infectious diseases. And, guess what, your unhelpful (read–damaging, you case harm, people die because of your bad information) on sites like AoA just makes you look worse at times like that.

Here’s their article for the day Dr. Richard Moskowitz: Advisory on the Coronavirus

I knew they’d have nonsense like this up during this outbreak. It makes no sense. Not in the “their advice makes no sense” way (their advice does make no sense). Rather, in the “right now isn’t a good time to tell the world you give out bad advice while people are dying” way.

Here’s a quote:

When I first heard of the outbreak, my attention was fixed on the coincidence that it began in Wuhan, near the Chinese bioweapons lab, and the obvious speculation that the virus was manmade, which still hasn’t been ruled out.

Yes, We get it. The very first thing your community does is try to fit this into a conspiracy theory.

I can hear it now–Oh no! He called us conspiracy theorists! We don’t have to actually consider what he has to say now! On top of being conspiracy theorists, you are cowards.

Moving on.

In addition, many physicians are recommending high doses of Vitamin C, say 3000 mg. daily for prophylaxis, and even more for the actual illness, with coughing and shortness of breath, at which point Dr. Brownstein suggests adding Vitamins A, D3, and iodine as well.

“Many physicians”. Yeah. My kid deserves (and gets) better care than these “many physicians” dole out. People need facts now. Not your one-size-fits-all alternative to medicine. Everything can be cured by vitamins! Yes, you guys have no real tools so you just suggest vitamin C all the time. Seriously, people joke about this.

Is it proven to help with COVID-19? No. Is there any real reason (outside of your alternative to medicine world) that it should? NO. Here’s the thing–has it been proven to not hurt? Yeah, you didn’t even think of that, did you. It always works. Why question that?

Homeopaths have had and continue to have great success treating epidemic diseases like cholera, yellow fever, measles, influenza, and the like, using a simple method that deserves much wider recognition and use. Once about 20 or 25 cases have been investigated, one remedy will be found to fit around 75% of the cases, and is therefore designated as the basic remedy or genus epidemicus of the outbreak.

No, they don’t. Homeopaths don’t do anything. Using latin “genus epidemicus” and italics don’t change that.

People are dying. Now is not the time to advertise that you give people bullshit advice. I know you actually believe this. I know you somehow think that being intelligent means you can’t do something “stupid”. You are wrong.

If you thought this through, you’d back off. Go quiet until people stop paying so much attention. But you can’t. I’ve seen it again and again.

Thank God my kid gets better than you, Richard Moskowitz, M. D.. Thank God I didn’t get sucked into the sphere of nonsense and pain that is the Age of Autism and similar communities.

I’m better off for it and so is my kid.


By Matt Carey

Lessons from COVID-19 for the “vaccine skeptic” community.

13 Mar

Allow me to start with a litmus test, if you will. Many, perhaps most, of you who call yourselves “vaccine skeptics”, or “vaccine risk aware”, or “vaccine safety advocates” are actually anti-vaccine. If my telling you this makes you immediately discount what I’m about to say–you are a coward and you would never face the facts anyway. It takes guts to question your beliefs, and I’ve seen little of that in your community. So feel free to move along.

That said, in the past few years the leaders in your community have been telling you things that are flat out wrong. Lies if you will. (does that make you too uncomfortable to keep reading? Read the above, re: cowardice). Here are a few of those lies:

Diseases can be deadly
The human immune system can not fight off any an all diseases. I’ve heard people like Del Bigtree claim that somehow our immune system is “divinely” endowed or designed, and we should be able withstand diseases. We can debate theology elsewhere. But this is just a lie. People of all faiths have died from diseases throughout history.

People don’t want “natural immunity” at the risk of death
There’s a strange argument that fighting off an actual disease is good for a person. That “natural immunity” (derived from actually being sick) is a good thing, and immunity from vaccines is bad.

Guess what. Most people don’t believe that. Why? Because it’s a lie. But leave out the lie part: the public isn’t with you on this. People want to not risk death in order to get some “natural immunity”.

Better sanitation and alt-med don’t protect
There is a strong alliance between the alternative medical community and the anti-vaccine community. Alt-med practitioners make more money when people are scared of actual medical practitioners.

Let me put it more simply and direct–there is a huge conflict of interest at play here. Alt-med people profit from the fear they produce attacking vaccines. Does that make you too uncomfortable to consider what I’m writing? That’s a sign of cowardice. Sorry to keep hammering this, but all too often I read “Look at so and so calling us anti-vaccine! They are just persecuting us! Don’t consider what they are saying!” Every time I read those comments or blog posts, I just think, “you are such a coward”.

That all said, COVID-19 is killing people across the globe. People in developed countries are dying. People die more often when the medical system is overwhelmed. Which means that actual medicine, not alt-med, is keeping people alive.

Other diseases are deadly too
COVID-19 is causing huge problems in part because it’s new. We are a virgin population without immunity. That’s why the death counts are so high. But other diseases also kill. And they kill in developed countries with good medical care. Example–people die in France from the measles. Yeah, measles kills. We have been lucky here in the US, precisely because vaccines have kept the infection rate down.

While we don’t have the experience of our parents and grandparents, who saw these diseases sweep the country repeatedly in their youth, most of us understand that diseases kill. They maim.

Consider the classic fake risk/reward argument offered by the anti-vaccine community: “vaccines are dangerous! Diseases are not! Natural immunity is good!”.

The public knows you are lying. You may believe this argument, but that just makes it a different kind of lie. That’s what “spreading misinformation” means. It’s a polite way of saying, “they believe this, but they are wrong, and there’s enough evidence to prove them wrong that it’s a lie”.

There isn’t a huge population waiting for you to lead them
In my years watching the anti-vaccine community I’ve often seen the theme that the public secretly accepts their messages.

We don’t.

Look what happens when measles breaks out. The public doesn’t want your message. The public doesn’t want to be led to a world where diseases run free.

The public isn’t ignorant
I often read how the anti-vaccine community thinks that they are educated and the public is ignorant.

The basics of vaccine science are simple. Basic germ theory. Most people get it.

The basics of disease are simple. People suffer and die because of diseases. They die. Just because you may, and your leaders certain do, deny that fact doesn’t make it not true.

And when people forget, there are groups that are willing to give out good, accurate information.

Summary
I could go on and on. But here’s the thing–your community is dangerous. Your logic is flawed. Your conclusions are wrong. These aren’t opinions. These are facts.

I’m encouraging you to take stock of your messages and your logic. I doubt you will. I know few of you will read this, and very few would get past the first paragraph. But, please, take a look at the world around you. Question your beliefs.


By Matt Carey

Judge Rotenberg Center’s shock devices banned by the FDA

5 Mar

One school and one school only uses electric shocks as a main part of their program. This is the Judge Rotenberg Center and the students are largely autistic.

Up until now.

The FDA has banned the devices.

ACLU COMMENT ON FDA’S FINAL RULE TO BAN ELECTRICAL STIMULATION DEVICES

From the ACLU statement:

“People with disabilities deserve the right to be supported with dignity and respect, and there are no circumstances under which they should be subjected to pain as a means of behavior modification.”

Here is a news article:

FDA bans shock device used on mentally disabled patients


By Matt Carey

Lydia X. Z. Brown : Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.

15 Dec

Lydia X. Z. Brown has an opinion piece in the Washington Post which, in my humble opinion, is well worth reading:

Autistic young people deserve serious respect and attention — not dismissal as the pawns of others.Donald Trump’s attempts to discredit Greta Thunberg are the latest attempt to show autistic people can’t speak for themselves.

Here are the first two paragraphs:

When Donald Trump called Greta Thunberg “so ridiculous” and said she needed to “work on her anger management problem” and “chill,” it felt all too familiar. Like Thunberg, I am also an autistic activist used to people with more power dismissing me as angry, unmanageable and unlikable. These attacks come alongside insinuations that I never belong in the room and do not deserve the accolades I have earned.

Even when autistic people are honored, like Thunberg was when she was named Time’s Person of the Year, we are immediately discredited as children, reinforcing the ideas that children and autistic people alike have no agency and our work is illegitimate. For me, this has happened at every stage of my work as an advocate, since I drafted legislation on police training in Massachusetts when I was still in high school up to when I designed lesson plans on disability justice used in thousands of middle and high school classrooms through Amplifier’s We The Future art education project.

Lydia Brown is someone I respect a great deal. I’ve been following them for many years.

My autistic kid is lucky that advocates like Lydia are out there.


by Matt Carey