Most of my stories tend to be a bit grim. But today is different.
There is a family in my town—a single mom and her autistic son. Every week they go to the grocery store and buy bologna from the nice lady at the deli counter, who always talks—to both of them. A few weeks ago, she asked the young man what he wanted for Christmas and he replied “a guitar.”
These are poor people. Chances are, the mom couldn’t afford any presents at all this year, let alone a guitar. And the nice lady at the deli counter was maybe just a little bit better off. She wasn’t going on any shopping spree.
But when the family came into the store this week, there was a gift waiting for them. The deli lady gave the young man her own, well-loved guitar. There is a picture of him, holding it and beaming, in our local paper.
This isn’t inspiration porn. This isn’t a story about benevolence granted from on high to the sad autistic person. This is a story about the true spirit of giving, about poor people, in this year of death and misery, being kind to one another.
For those of you who celebrate this holiday—Merry Christmas!
In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. Edgar Walters at The Texas Tribune:Texas social workers are criticizing a state regulatory board’s decision this week to remove protections for LGBTQ clients and clients with disabilities who seek social work services.The Texas State Board of Social Work Examiners voted unanimously Monday to change a section of its code…
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.
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.
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.