Hi. As many of you know, a lot of the posts on this blog are part of a book on autism and human rights in the United States that I am close to finishing.
Now I’m starting to spread the word about it (before they even consider your book, publishers want you to have a group of people who are interested in buying or reviewing it already in place . . .)
If you are interested, please go to my author’s website at http:/meganmclaughlinwriting.com and sign up for email updates (I promise there won’t be too many, because that’s annoying, right?)
In Utah, an autistic 13-year-old with severe separation anxiety had a meltdown when his mom had to go back to work. She called the police to help get him to a hospital. She explained that he was autistic. She explained that he was unarmed.
And yet, they marched into the house, ordered him to “get on the ground” (great idea during a meltdown–*sarcasm*) and then shot him multiple times. He’s in the hospital with injuries to his intestines, bladder, should and ankle.
This is what comes of having “warrior” policing. It’s time the police start thinking of themselves as guardians of the people, not warriors. (see Seth Stoughton, “Law Enforcement’s ‘Warrior’ Problem” on the Harvard Law Review Forum). And it’s way past time for the police to learn what a meltdown really is and how to deal with it.
I volunteer as an advocate for parents who need help at IEP meetings. Just sat through a doozy.
First, the district had to exclude the special ed teacher and program director from the meeting because they had been actively harassing the mother.
Then, there was the fact that the mother had never been sent a copy of her son’s latest evaluation, on which this meeting was supposed to be based.
But the final straw was that the school district wanted to place her kid in a separate special ed class, based solely on the fact that he had an IEP. He wasn’t having or making trouble in the regular classroom, and he was learning stuff there. But he had an IEP so he had to go. For those who aren’t familiar with this stuff: that is NOT an adequate reason for moving him. The mom is now getting a lawyer.
Sometimes I just can’t believe the stuff that goes on in our schools.
Truck driving away with mailboxes taken from sites in Oregon State
Folks with disabilities often vote by mail–especially if they lack transportation or have mobility issues. We need a properly functioning post office, with all the machinery needed to sort mail quickly, and with allowance for overtime pay, so that postal workers can make sure ballots get returned on time. The current postmaster general has pulled out and destroyed hundreds of sorting machines, so that they can’t be replaced. He removed many mailboxes (exact number unknown), before the media found out what was going on and public opinion stopped him. And he’s stopped paying overtime to postal workers so that they can put in the hours to get mail sorted and delivered on time. I think this is not “good management,” but rather a blatant attack on mail-in voting. Give us back our post office!
Beloved older daughter has finally completed all the course work she needs, and is scheduled to graduate from college at the end of this month! Of course, there won’t be an actual graduation ceremony because of the pandemic. But she has ordered a cap and gown, so we will at least be able to take pictures of her.
It’s been a long and difficult haul for her, but she persevered. I’m so proud.
What the unemployment figures are like now, during the pandemic, for autistic workers?
There’s been a lot of controversy about Myka Stauffer and her husband’s decision to “re-home” their adopted autistic child. Today in the Washington Post Katherine Sanford did a version of the traditional “walk a mile in their shoes“ argument in their defense. To her credit, Sanford mostly blamed the lack of social supports for parents of special needs kids, although she also managed to get in a few whines about how hard it is to deal with a non-verbal 13-year-old in diapers.
Well, guess what? I’ve already walked the mile. Been there. Done that. Wiped the feces off the wall. Bandaged the bites and kicks. And I say it’s time for parents who either gave birth to or adopted a special needs kid to stop thinking about how hard it is for them and start thinking about how hard it is for their kid.
These kids have minds—even if their thoughts are concealed by their lack of speech. They have hearts—even if you can’t recognize their feelings. They hear what you say to them and to others, and react to it—even if you don’t understand their reactions.
Stauffer’s son has already been rejected by one set of parents in China. And now he’s been rejected by another set in the U.S. So what do his mind and heart tell him about this? That he’s worthless. That he’s so bad that adults just can’t stand to keep him around. It’s not ok to do that to a kid. Any kid. Autistic or not.
The last week has been hard for all of us, but it’s been hard in a particularly weird way for my family. We have been getting an “up close and personal” glance at the huge divide in this country between Trump supporters and the resistance.
My husband and I are your classic old white liberals. We have a “Black Lives Matter” sign in front of the house, we’ve been marching despite our fear of Covid-19, and we’ve been signing petitions and writing letters. It’s not much, but we do what we can in support of our African-American brothers and sisters who are still hurting so deeply.
Our autistic daughter, who generally shares our political views, recently moved in with her boyfriend. He has a house in a tiny rural village, mostly occupied by members of his extended family. And that family is about as far from liberal as you can get. They all get their news not even from Fox News, but from Facebook. This led them to conclude last week that a caravan of “black looters” was on its way to their village to pillage and plunder. Beyond the fact that there is no black community nearby to provide the looters, it doesn’t seem to have occurred to them that they have nothing worth looting. But they imagine that people who are racially and ethnically not like them are always on the verge of doing something awful.
As my husband and I worry about police brutality and attacks on civil liberties, our daughter is listening to hateful remarks about African Americans, and about how President Trump needs to declare martial law and use the army to restore law and order.
In the end, I suppose it is useful for us to be aware of such a different world view. But in this moment it sure is weird and disorienting.
Powerful words from Carly Fulgham
Friday night, March 27th, I told my husband, “If I get COVID-19 and have to be hospitalized, don’t tell them I have Autism.” The next morning I woke up angry that I had to say that so close to the 30th anniversary of the Americans with Disabilities Act. March 12th marked thirty years since eight-year-old Jennifer Keelan abandoned her wheelchair to crawl up the steps of the US Capitol building to prove that people with disabilities deserved an equal chance in life. Thirty years later, it’s still an acceptable option to consider us less.
Doctors in Italy are “having to make hard choices” about who is worthy to get treatment, with age and disability being part of the discussion. I’ve heard these tough choices are being debated from Washington state to Alabama as well. When this ethical conundrum comes to my town, I hope that our medical leaders remember that in many cases, disability is just a label, and should be used as a criteria no more than race, religion or gender.
In addition to my autism, I have asthma that is bad enough that I have a greater chance of needing a ventilator. If I am so sick that I’m in the hospital, how are they going to know that besides the “Autism” written on my medical chart, I’m a wife and a mother to a two-year old? A Vice President at one of the biggest companies in America where I’ve just won a Global Diversity & Inclusion Award? A volunteer member of the Board of Directors of Autism Society of California, The Art of Autism, and Autism Society of America? The volunteer President of Autism Society of Ventura County where I’ve increased our program offerings more than tenfold in four years? How will they know all this when I’m alone and too sick to explain why my life matters?
Do you think I’m different from other people with disabilities? That my accomplishments make me the exception and not the rule? That my family will care about my survival more or less than another’s? When we’re desperate for oxygen, we all look the same. The only differences are the labels on our chart, like our disability and our age. We expect our medical professionals will not discriminate based on race, religion, language, age, or disability during normal times. We cannot abandon the basic human right to live now, no matter what label we wear. I’ve still got a lot more to give to this world.
I’m not done yet.