This week, I bring you an essay I wrote two years ago, in October 2019, before the world changed — though many of the conclusions I have are the same. True service to needy people would look a lot different than the systems we have now.
I’m not gonna lie: My life is super awesome.
I think it’s important to say as part of a newsletter that involves a fair amount of complaining — both for the sake of accuracy, and to acknowledge my own privilege as a middle-class white woman with apparently enough free time to write a newsletter about how much of her time is wasted interacting with government services.
But I also think it’s important to say that because there are typically only two narratives that we hear about people with disabilities and their caregivers: tragedies, or stories of inspirationally overcoming tragedy.
In as much as any person’s life encompasses both, mine does too. And so I imagine it will be in my children’s lives.
We need help with the hard parts, yes, but that doesn’t mean the rest of our lives have to be less rich, less complex, less full of potential than anyone else’s.
There are many shades of gray in our lives — bright spots and darker parts — some that have nothing to do with disabilities, and others that run smack into them.
I’m in a bright spot right now. A really bright and sunny spot — the 38th floor of The Palazzo resort hotel in Las Vegas. It’s October and so pleasantly high-70s as I look out over a lush golf course with the rim of the Spring Mountains in the hazy distance. Not that it matters much to me what temperature it is outside. In my high tower suite with climate controls, I am pinkly clean, glossy with lotion and about nine feet tall. I have just been luxuriating inside the Canyon Ranch Spa for most of the day.
I’m here in large part thanks to the very hospital where my twins were born. No, not because of some massive multimillion-dollar lawsuit settlement (I wish) but because my husband works for them — as he did then.
Back then, he was a pharmacy technician — scrambling to provide for a sudden family of four on an equally sudden single income. The food stamps and WIC money couldn’t come fast enough at that point in our lives. But through people-friendly charisma and dogged determination, he had jumped twice into IT careers — learning on the go and making friends with the right people — so that we could now make ends meet even after I quit my newspaper gig.
It was for the medical center that Matt was here, taking in a conference on data technology, and — desperate for a break — I hitched a ride. I wasn’t entirely sure what I would do in Las Vegas, but I mean, c’mon, it’s Vegas. For a $200 plane ticket, I was sure I could figure out something.
And so I did. For $179 (minus a $40 coupon, but plus 15 percent tip), I bought a massage and thus entrance to the Canyon Ranch spa on the third floor of our hotel.
I was going to be happy enough with just the massage but the booking screen advised me to show up an hour early.
Having nothing else to do but read a book in my fancy hotel suite (which I had gloriously done most of the previous day), I took the advice.
Cushioned in a heavy robe the color of dark chocolate, and snug in brown vinyl slippers in the half-size I needed, I ended up spending hours hanging around the various fancy showers, saunas and other amenities. I even read a book for an hour in a small alcove with its own reading light, a plush grey blanket, and self-serve trail mix.
It was heaven, dear reader. Actual heaven.
...Although.
Well, it’s been said that wherever you go, there you are. And of course despite my masseuse’s very skilled attempts to numb my brain through her fingers, I found my thoughts repeatedly returning to two women.
The first was my sister, Chelsea. She was one of the people who allowed me to even consider this frivolous trip that I desperately wanted to take with my husband. It was through her willingness to take on primary caregiving for her two impossible nephews for three days that I could. I hoped she wouldn’t hate me or my children by the end of the trip. I also hoped she would get good news from the doctor.
They had found a concerning lump on her hip — a vascularized sarcoma. Her primary care doctor didn’t like the way it looked, even after an MRI, and she was going to see the specialist at about the same time I was trying out the aromatherapy sauna.
After watching our mother’s rapid decline from ovarian cancer five years ago at the age of 61, we both knew that cancer was not something that happened to “other people.” We knew that this was not at all assured to turn out OK.
The other woman haunting my spa visit was Kendra*. A cheerful young woman with an iron rod for willpower, Kendra had helped me with Mack* for much of the past two years. While not the most reliable worker, she had been a steady and calming presence in my house, often talking about what “we” would do about situations years in the future and waving away my fears that she was too overstretched to keep working for us.
Until, one day about two weeks prior when she texted to say that she wouldn’t be back. She needed to focus on her schoolwork and it was just too much to keep coming to help Mack. This I agreed with and understood — she was, after all, working another job at night in addition to her soccer schedule and full-time college courses. But I implored her to come back for one last shift so that it wouldn’t seem to Mack that she had just disappeared. I also asked her if she still planned to help my sister while I was in Vegas.
Perhaps that’s where our lines got crossed. In my mind I was asking for two different things — a last shift to tell Mack that she wouldn’t be coming over three afternoons a week anymore, and a final hurrah. In any event, she stopped responding to my text messages and I assumed she had ghosted me. Heartbroken, I moved on to seeing who could cover for her.
Much to my surprise, she texted the night before I was to leave early in the morning for Vegas to ask what the plan was.
Well.
One funny thing you discover as a parent of disabled children is that while no one stops you at the door of the hospital from walking home with your baby(ies) with only your own two hands and whatever knowledge happens to be in your head, many institutions object most strenuously when similar burdens are placed on their staff. At school, for example, it takes a minimum of five people to replace me — two teachers, an aide each and a case manager, not to mention a phalanx of advisors in physical, occupational, speech and other therapies. I often wonder what they think when they see that I’m handling them for the other 18 hours of the day largely unaided, or if they even notice.
Anyway, when we go on vacation, it is truly remarkable how much time and planning and manpower goes into it. Many medical parents can’t ever have that sort of a break. They don’t have anyone close enough willing to watch their kids and they don’t have even the modest sums I spent on this trip.
So, no, the night before an out-of-state trip was a little late for an overture from Kendra.
Without her, I needed to find a new person who could fulfill the service the government was willing to pay for: up to 280 hours per month of in-home caregiving for Mack. The program, under Medicaid, is a frequent source of frustration for me and my friends. The numerous requirements and restrictions made it nearly impossible to use. And then there was the simple frustration of finding and training new staff — people you hope care about your kid but you know will never love them enough to not leave.
Ahhhh. I pulled my mind back to the salt grotto where I was relaxing in my chocolate robe under an undulating rainbow light. Picking up my pampered self from the reclined tile benches, I went to shower off the massage oil. Walking past, I noticed the lift track in the ceiling over the hot tub, the silver hand-holds everywhere, the white terrycloth mat outside each shower. Each one to me held a nod toward a need to aide those with diminished abilities — either through disability, age or simple light-headedness. We are all disabled from time to time.
I walked into the mirrored sinks and found a special bottle of sunscreen marked SPF 50 for incredibly light skin like mine, gel for my curly hair, hair spray for straight hair, and shower caps for those who would rather not wash out their weaves.
“Now this is true service,” I thought. “Is it really so hard or so expensive to think of everyone’s needs?”
“Really, Shasta?” another voice interjected, “Is that really what you are arguing? That government services act like a luxury spa? Have you lost it?”
I scrunched my hair and turned on the hair dryer.
“Well. And why not? How expensive was it to get in here? $150? How much in taxes have I already paid this month or even during this trip? When you pool together resources, it can really end up being a lot of resources if it’s directed in the right ways. And hey, weren’t some of the first baths public? Didn’t the Romans make sure everyone had this sort of self-care? Don’t other countries have public baths? Why is it so crazy to think that public services should provide real, actual health and relaxation for its people?”
It is crazy, though. In America, it’s terrifying to suggest that public dollars be spent on anything that would truly help you and your family. Public dollars have become something that can only be spent on public employees to “help,” regardless of how the beneficiary might want them to be spent.
There is only one government service in America that I can think of that truly follows the social service buzzwords of a “person-centered plan” and a “self-directed service model”:
Libraries.
At a library, public employees are guides but no one is micromanaging your affairs. You can check out 100 books or 1 book; no one worries that you are abusing the system. In fact, they are happy that you are getting what you need. Penalties come when you don’t do what you agreed to do (use the resources respectfully) but they are not life-altering.
What would true service look like in our disability services? I have a lot of ideas but for one I would love to have a public spa to take my son to — something that would ease his spastic muscles, improve blood flow and digestion, aid in mental relaxation. A place I could use, too, to improve my ability to continue caring for him — lifting him and staying alert. I imagine it like a walk-in club, with a daycare that welcomed all children, regardless of need. A library, but for health and wellness.
It sounds crazy, but it’s not.
The idea of “welfare” — the government taking some of its revenue to better individuals’ lot in life — began in America with Social Security.
(Read my breakdown of Social Security for parents of disabled children here.)
Dr. Francis Townsend’s plan for a guaranteed retirement income, inspired by watching three elderly women pick through trash for food in 1933, snowballed rapidly.
In just two years, it became a national law. It was that popular.
Decades later, it is the mess we know today. But it started out simple enough: Just help people. Give them money if they don’t have it. Let them direct their own lives. Simple.
I clicked off the hair dryer and ended my toilette with a sigh. Could it ever be that simple again?
I went to check my text messages.
“The doc thinks it’s not cancer,” my sister had texted me.
For all the struggles — the ones I can do something about and the ones I can’t — my life is super awesome.
*Not their real names.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world.
• From PhillyVoice: “Pennsylvania's school curriculum mostly ignores disability rights, but there's an effort to change that”
"My children have had the enormous benefit of witnessing and being a part of the disability rights movement, and understanding just what it means to normalize accommodations and disability," Erin Gabriel, of Hanover Township, Northampton County, said. "Obviously, not every kid gets that opportunity. Not every family has the time or resources to ensure that their kids, whether they are disabled or not, can share in witnessing and learning about the civil rights movement that is the history of disability rights. And that's where schools should step in."
The legislation was introduced in October by Republican Rep. Jason Ortitay, of Western Pennsylvania, with support from several House Democrats, including Rep. Joe Hohenstein, of Philadelphia. The bill would create a pilot program to provide instruction in at least eight Pennsylvania schools on the social, political and historical contributions of people with disabilities.
• From CapRadio: “Why millions on Medicaid are at risk of losing coverage in the months ahead”
As of July, 76.7 million people, or nearly 1 in 4 Americans, were enrolled, according to the Centers for Medicare & Medicaid Services.
When the public health emergency ends, state Medicaid officials face a huge job of reevaluating each person's eligibility and connecting with people whose jobs, income, and housing might have been upended in the pandemic. People could lose their coverage if they earn too much or don't provide the information their state needs to verify their income or residency.
• From Disability Scoop: “Years After Federal Directive, States Expand Autism Coverage”
More than seven years after federal officials told states that Medicaid must cover treatments like applied behavior analysis for children with autism, all 50 states are finally following through, advocates say.
Just this month, Texas became the 50th state to add autism services, including ABA, for children enrolled in Medicaid.
The move caps a years-long push by advocates with Autism Speaks to expand access to autism therapy to kids covered by the government insurer.
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What is service?