Hard Landings, Hard Truths
Book Review, Cammie McGovern's Hard Landings
Cammie McGovern’s journey to find a path for her son, who has both intellectual and developmental disabilities (IDD), is eerily similar to my journey. I, too, had to spend an entire year learning the ropes, after my son finished high school. In fact, I visited several programs that she mentioned in her book, Hard Landings: Looking Into the Future for a Child With Autism. She highlights one program that teaches computer graphics to people on the spectrum; Ian is learning to make film credits in their Wednesday evening online class.
You might smile and say “small world.” But it isn’t really. As McGovern points out there are 7 million people with developmental disabilities in this country. Our world only becomes small, when you’re trying to find good places for your adult child with differences. There just aren’t many good places out there.
In the past, institutions were the destination for adults with disabilities, and by the 1970s, their horrible conditions were the subject of high profile exposés. Last year, I interviewed a social worker who worked at one of the most notorious institutions:
Looking back at his time at Willowbrook State School — the now closed institution for individuals with intellectual and developmental disorders on Staten Island — Marco Damiani told me that he’ll never forget the smell.
“There was no smell like it. Those buildings had a unique odor. It was memorable,” Damiani said. “It hardened me.”
Closing the doors on those “snake pits” was no doubt the right thing to do, but the problem is that the state didn’t replace institutions with anything. So, we have a system that dumps the kids and the parents onto a poorly integrated system of social services with no road map. I spent a year trying to understand the system and figure out a good path for my son — and that plan only works for the next two years. After that, who knows?
It’s completely insane that McGovern and I were both completely unprepared for all this. Both of us were in the disability world since our children were little. But schools don't want parents to panic and freak out, so they don’t tell us. Nobody else is in charge of guiding us, so when schools bow out, we’re faced with the monumental task of getting self-educated on the disability system with twice-a-week webinars from lawyers and non-profit organizations.
Like me, McGovern believes that dumping autistic people in solitary apartments in small towns doesn’t work. Neighbors never reach out to invite them to dinner or the movies. There’s little real community anymore, she says, pointing to Putnam’s Bowling Alone. So, disability people in those solitary apartments face crushing isolation.
Instead, she would like to see more intentional communities for disabled people — nice housing units with common activities for group meals and weekend trips to the bowling alley. Aides are there to support those with higher needs. They would have access to job coaches and therapists.
Our local news station had a segment on an intensional community like that in the works in New Jersey. (It looks great on paper!) Like the handful of other nice programs in this country, its development is being spearheaded by parents. The reporter did not explain how parents were getting around the anti-institution laws on the books and how they were funding it. A mutual friend hinted that these parents were extremely wealthy. So, there are more places being created but only for the children of Wall Street brokers and cancer doctors.
At first glance, Cammie McGovern and I have different struggles, because our kids are different: her son has both developmental and intellectual disorders, while mine just has developmental issues. My son can program in Java script; hers struggles to tell the difference between a nickel and a dime. But the autistic quirks in my son are still real, which mean that he can’t be a full time college student and or have a part time job in Home Depot yet. There are large boulders on his road to independence.
At this point, we expect that our son will live with us for many years to come. But he needs more than that. He needs to be part of the community and have minimally supported jobs to keep him amused, while he takes his computer classes in the evening. Hopefully, he’ll eventually get a spot in one of the few housing units set up specifically for those high-functioning autism and meet some nerdy girl down the hallway.
For any change to happen, parents must become politicized, McGovern concludes. She says that parents understandably tend to downplay problems to avoid pity and to protect their children, but change only happens when people advocate for their needs. Just two weeks ago, I realized that I needed to spend more time organizing parents and getting involved in local politics.
Parents of disabled adults are all on the same path. We’re getting educated, seeing the obstacles, forming alliances and organizations, and getting loud about the needs for change. I think we’re on the edge of a new movement, which is both exciting and exhausting at the same time.
Brief Thoughts and Hot Links
How was your Thanksgiving? Our initial plan for the weekend was to drive up to Boston with Ian to eat nice food and go to museums. But we’re still on low battery, recovering from Steve’s six weeks on jury duty while managing his full time job. I canceled the hotel and planned on three day trips into New York City. Honestly, we were so tired that three days in New York City was whittled down to one day to Brooklyn. The rest of the time, I read books on the sofa.
I posted Thanksgiving, turkey stock, and Brooklyn pictures on Insta.
What books did I read this weekend? I reread Educated by Tara Westover — probably one of my favorite memoirs. And Hard Landings — a book that covers a lot of the same territory as The Great Leap.
All that time on the sofa was super necessary. I jotted noted notes for four pitches this morning. And then went out for a three-mile walk and some podcast listening. After a long break, I’m back to listening to The Daily every day. Last week’s episode about turkey cooking was great and got me interested in mayonnaise-covered turkey. Today’s episode is about Qatar’s $220 billion FIFA expenditure. Super interesting.
Are you shopping online today for Christmas gifts? Use one of my links to buy anything, please.