This blog post will be a little more serious than my usual ones. There will be fewer cuss words, fewer jokes about politicians, and fewer references to pumpkin spice products. But, please keep reading, anyway.
A few weeks ago, I was invited to speak at a conference about my disability— Spinal Muscular Atrophy. This conference is a way for medical professionals to learn the newest research and collaborative ways to improve patient care. As a person with SMA, they wanted me to offer my perspective and feedback to the attendees.
I quickly agreed. Highlighting the lived experiences of disabled people is something that is often missing from events like these. Nothing annoys me more than having nondisabled people talking about how best to “care” for us without any effort to elevate our disabled voices. So, any chance I get to promote disability awareness– I am definitely going to take it.
So, I was all-in on speaking at the conference. After all, the knowledge that I have as a person that has lived with SMA my entire life is just as valuable (if not more so) than a doctor with four framed degrees on their office wall.
I started planning what I would say. What to wear. What topics seemed important to me. How I needed to make sure not to use any four letter words– which I tend to do, even when I don’t mean to. (I’m working on this. Really.)
However, after I happily agreed to participate, I found out something that changed everything. Masks were voluntary at the conference— they were not required. And the only way I found this out was that I had to directly ask an organizer about this safety protocol. If I had not asked, I would have shown up to the event unaware of this.
So, in summary:
A medical conference about Spinal Muscular Atrophy (one of the most complex, deadly genetic diseases in existence) seemed to be okay with not making masks a requirement to attend their event.
The reason for this decision? The conference organizers didn’t want to “impose additional requirements” on attendees. (The targeted demographic for the conference being medical professionals— who are nondisabled).
Yet, it didn’t seem to register that they were now hosting an SMA conference where an actual SMA person doesn’t feel comfortable attending.
Now, I know I’m not in PR, but this doesn’t have good “optics.”
In addition, many of these medical professionals will interact with high-risk SMA folks regularly. They don’t think a masked event is a good idea? I’d think the only thing they’d want to bring home from the conference is a free T-shirt and a stale poppyseed muffin from the breakfast bar— not an infectious disease.
To be perfectly honest, when I learned this, my stomach dropped. I felt nauseated. I felt tears prickle the corner of my eye. (It’s ableism at its most basic— prioritizing the wants/whims of the nondisabled to the disabled’s exclusion.)
Yet, a part of me was not surprised given how the world is trying so hard to return to normality. But, for those with SMA (and other disabilities) we’re endangered when society tries to act like the last 2.5 years didn’t happen.
Disabled people, especially disabled people of color, have had the highest mortality rates for COVID-19— and the lowest access to health care. This pandemic has been real to us in a way that it hasn’t been for other people.
The trauma of this continues for us each and every day. Yet, while society is now trying to “live with the virus,” disabled people are the ones more likely to die from it.
As a result, within the disability community, masking is seen as a form of accessibility. Like elevators, ramps, ASL interpreters, closed-captioning and large-print. Masking (along with testing and vaccines, of course) allows high-risk people to participate in society more safely, securely and fully. It is a way to say, “I care about you. I see you. I want you here.”
Therefore, despite my initial enthusiasm, I won’t be attending this SMA conference. I am disappointed and sad. Disability can be isolating, and it cuts a little deeper when society displays such obliviousness.
So, I am left with this final suggestion: if you are planning a public event, please consider the disabled when you do so. By going beyond the basic policies of your city/school/company, you can ensure your event is more accessible and inclusive. (After all, those policies were made for political/economic reasons that suit the nondisabled masses. Not people like us.)
Don’t forget: the disabled will never be able to take a seat at the table unless we feel safe to do so.
It’s up to you to help make that happen.
UPDATE: Upon reading this blog post, conference organizers changed the policy to make masks mandatory. As a result, I decided to participate in the event. While I am happy they reconsidered, I’m also disheartened by the lengths that disabled people like me have to go simply to have our needs met. This extra labor is exhausting— especially when many of these accommodations should already be in place. —E.
#DisabledLife is filled with unexpected surprises. Sometimes, it’s having a caregiver call out, leaving you scrambling to find someone to come get you out of bed before your bladder explodes. Sometimes it’s getting into your wheelchair, desperate for coffee, only to discover that the motors have died. Mind you, this is just 18 months after you spent $1,000 to replace those same motors. Good luck getting insurance to pay for it… those miserly wankers only dispense wheelchair repair money in tiny allotments— like it’s radioactive uranium.
#DisabledLife is also all the time you burn navigating the minutia of a society not designed for people like you. Inaccessible places. Healthcare bureaucracy. People that won’t wear masks. But, if that wasn’t enough, #DisabledLife is also spending hours trying to get medical professionals to believe that you know more about your own needs than they do. (Heaven forbid!)
This weekend, I had another one of these #DisabledLife surprises. In my mailbox, there was a packet with one of the most dreaded return marks in the corner:
SOCIAL SECURITY ADMINISTRATION
When I saw it, I knew that nothing fun would be inside. There would be no Target gift cards, or 50% off coupons for pumpkin spice candles. There would be no sweet messages with heart emojis or stickers that smell like root beer. Instantly, I knew that no matter how good my day had been going up to that point, that the rest of my joy (and patience) was going to be drained by the contents of that envelope— like a damn black hole.
Yes, I actually said this aloud.
Then, I stared at the envelope for a few moments, debating when/how to open it. I eyed it suspiciously, like a bomb squad specialist defusing an explosive. When I couldn’t take the anxiety anymore, I grabbed my homemade letter opener (with a long handle designed for my weak, skinny hands), and sliced it open.
I read the top of the page:
“The Social Security Administration must regularly review the cases of people getting disability benefits to make sure they are still disabled under our rules. It is time for us to review this case. Enclosed is a Disability Update Report for you to answer to update us about your health and medical conditions, and any recent work activity… Please complete the report, sign it and send it to us in the enclosed envelope within 30 days…”
In case this jargon is confusing, let me translate: Social Security has given me 30 days to prove that my permanent, genetic disability hasn’t magically disappeared… like classified documents do at Mar-a-Lago.
I grumbled. And cussed some more. Then, I changed my weekend plans from “Binge Abbott Elementary on Hulu” to “Fill Out Useless Paperwork.”
My irritation was massive. It took all my willpower not to set the packet on fire. (Truly.) Yet, I managed to complete the forms. For the sake of my own sanity, though, I added the following letter for good measure.
Think they will reply?…
October 8, 2022
SOCIAL SECURITY ADMINISTRATION, P.O. BOX 4550, WILKES BARRE, PA 18767-4550
SENT VIA UNITED STATES MAIL
Dear Person Working At The Social Security Administration:
Hello. First, I’m sorry that you work at Social Security opening mail and reading letters just like this one. Everyday. Even after you’ve been sick with the “flu” — or, as is more likely, just hungover from too many margaritas.
Second, I’d like to introduce myself. My name is Elizabette. I live in California with a cat named Charley that likes to steal my breakfast. I was diagnosed with Spinal Muscular Atrophy, a genetic neuromuscular disability, at the University of California, San Francisco, just before my 2nd birthday. I started using a wheelchair at the age of four, when most kids are just learning how to pick their nose. My disability is progressive, so I transitioned to a power wheelchair at the age of seven.
Third, I’d like to assure everyone at the Social Security Administration that, yes, I’m still disabled. My genetic disability can’t be cured by clicking my heels together three times. In fact, I couldn’t even click my heels together if you asked me. Because, yes, I’m THAT disabled.
I need help with all my daily needs— like getting out of bed, showering, getting into my wheelchair, and cooking meth in my kitchen.
Anyway, here are a few more facts that might help you determine my disabledness. (Yes, I just made up that word. Feel free to use it, if you want.)
— I’m unable to drive, so I must hitchhike everywhere like a 1970s hippie just before they were murdered by the Zodiac Killer.
(Just kidding. Folks drive me around in an adapted minivan. You know, the kind of car that hauls around eight-year-olds and smells of stale Happy Meals.)
— I’m a patient of the Stanford Neuromuscular Clinic. I am followed by their team of neurologists, pulmonologists, physical therapists, respiratory therapists, nutritionists, butchers, bakers, and candlestick makers. My last checkup was on March 15, 2022. My next checkup is just a few days away.
— I’m attaching a copy of my health record from Stanford, just in case you don’t believe how damned disabled I actually am.
— I work from home a few hours a week as a bookkeeper. This part-time job gives me the flexibility to rest when necessary, and to tailor my work-schedule to my physical and medical needs. I can’t work a full-time job, or work away from home.
— My job pays me $600 a month. You folks at Social Security only give me $596 a month because you think I live in an alternative timeline where everything costs the same as it did in 1958. I use all my money to pay my caregivers. Every. Single. Dime. And it’s NOWHERE near enough to cover the total cost. This is why I sell my body on Craigslist.
— My lung capacity is 42%. Given my respiratory weakness, I am at-risk of severe complications from most illnesses. So, I avoid crowded, public spaces. This is a bummer, yes. But as most people kinda suck, I actually don’t miss this as much as you’d think.
— Oh, and I am unable to wipe my own butt. So someone else has to do it for me. Further, I poop twice a day. I know you didn’t ask this on the form. But, as Social Security seems to want to verify EVERYTHING about me, you might as well know this, too, right?
I guess that’s it for now. Let me know if you need me to provide anything else— like my firstborn child.
(appeared in today’s Patterson Irrigator HERE)
Hello fellow Pattersonites! It’s me. I know it’s been months since I’ve written. Time got away from me. It really did. Seems like just yesterday we were washing our groceries with dish soap and feeling grateful to find 1-ply toilet paper at the store. We didn’t care that our butts were chafed, we were happy to be alive.
I apologize for the delay in checking in, of course, but I thought I should touch base so you know that I’m not dead. Also, I wanted to let you know that I haven’t done anything crazy since last I wrote, either. For example:
#1. I haven’t joined a cult.
#2. I haven’t wasted twenty million dollars to go to space with Elon Musk.
#3. And I definitely haven’t joined an online multi-level marketing scheme to sell organic lip balm to every person I’ve known since 1997.
(Come to think of it, both #2 and #3 are also cults.)
Anyway, I hope you’ve been staying well and safe— and that you aren’t dehydrated from sobbing at the gas pump. So, make sure you drink lots of water and refrain from other activities that are bad for your health, too— like watching TikTok videos or being within six feet of Aaron Rodgers.
A lot has happened since last I wrote— on the local level, on the global level and on the personal level. But I can go no further without remarking on a sad local event. The passing of Ron Swift.
Publisher emeritus, quip master, and all-around stupendous fellow, Patterson will never again know a man as dedicated as Mr. Swift. We were lucky that Ron made this town his home all those years ago. For while Ron knew the things that needed doing, Ron also DID the things that needed doing. And it was done with a wry smile, self-deprecating wit— and little fanfare.
We could all learn something from that.
Seventeen years ago, Ron welcomed me to the Patterson Irrigator columnist family with open arms and was always there if I needed him. I appreciated that very much. He was Patterson’s very own Yoda, offering valuable perspective in a unique way that was always genuine and always unpretentious.
What a guy, Ron was. Missed, he will be.
On the global front, the last two years have been seismic. And, no, I’m not just talking about when Will Smith slapped Chris Rock. It’s been crazytown all over the place. For two years. Remember when a bunch of people attacked the US Capitol like zombies from The Walking Dead? Or when Prince Harry decided royal life was total crap? Or when Tom Brady retired from the NFL only to unretire himself a few weeks later?
It’s important to note that during much of this time many of us did not wear real shoes. Only socks or slippers with treads on the bottom for when we went to the grocery store. Or when we walked the 10 feet to our front door to grab the pile of Amazon packages sitting there. Sadly, we went so long without wearing real shoes that we can no longer fit them on our stumpy feet. But, when we go online to buy new (bigger) shoes, we now discover that shoes are 259% more expensive than the last time we bought them.
Yet, truthfully, it hasn’t all been bad. We did learn how to bake banana bread and what it felt like to spend 168 hours a week with our own children. So, there is that.
I do have to say, though, that some things that happened since my last column did come as a surprise to me. For example, I did not have “Putin Goes Ballistic” on my 2022 bingo card. Sure, I’ve made a lot of jokes about Putin in the past. About his shortness, his love of Botox, and the way his beady eyes look like death lasers. But I didn’t think he’d start a reenactment of the year 1939. Maybe I was naive, but you’d think he would have known that it was a bad idea. After all, everyone hates a bully. Everyone. It’s baked into our human genome. We hate bullies just as much as we love chubby babies, ranch dressing and Labradoodles. It’s even in the Bible. (Just ask Goliath.)
On a personal note, since my last column, two big events have happened in my life. First, I got an orange kitten. His name is Charley and he loves cheddar cheese, chasing tin foil balls, and taking naps on my wheelchair— mostly while I’m sitting in it. We’ve acclimated to life together pretty well, especially considering he tries to steal my breakfast two or three times a week. I’m sure I’ll share more about Charley in the coming days. After all, it’s hard for me to write about much else since he spends most of his day sitting on top of me. So, stay tuned.
The other big news? I turned 40. This may not sound like a big deal to most, but to me, it really was. After all, for most of my life, I didn’t know if I would live to see the age of 40 because most born with my disability do not.
As a kid, reaching 40 years old seemed like a mythical accomplishment. Something that was theoretically possible, but not likely to happen— like growing up to marry Indiana Jones or becoming best friends with DJ Tanner. While cool possibilities, it definitely was not in the cards for me.
In all honesty, the arrival of the COVID pandemic did not bode well for my chances to reach this milestone. I watched disabled and high-risk folks here, and around the world, lose battles with the virus. Yet, at the same time, I saw many doubt the risks. I heard jokes about masks, vaccines and other protective measures. Weirdly, I can understand this. After all, it’s easier to believe you’re immune from it all when you don’t look like me. It’s easier to push it all aside when you think you’re not one of those “pre-conditioned people.”
Coming into my 40th birthday during this pandemic was a surreal experience. For two years, each day has been difficult— for ALL of us. Yet, personally, I have keenly felt that each day has been a gift, too. Even though we still have a long way to go, each day I have survived has been a small victory.
Thus, when the clock ticked to midnight on my 40th birthday, I stared out into the darkness of my bedroom—contemplating how far I had come. And, then, I whispered:
“Watch out, Indiana Jones… I’m coming for you.”
Most are familiar with the notion of pay gaps— when different groups of people earn different amounts of money for doing the same work. Much scholarship has been devoted to gender pay gaps, and in recent years, to the pay gaps experienced by people of color. These conversations are essential— for these disparities deeply impact the daily lives of many people, and ricochet outward into society. They can influence social policies, laws, economic opportunities and— at the core of it all— who, and what, we truly value.
However, there is a pay gap that gets very little attention, even though it’s right there under our very noses: the disability pay gap.
While the statistics can vary, a disabled person earns an average of 15-37% less than their able-bodied counterpart. Given that many disabled people have added disability-related expenses that nondisabled people don’t have (higher medical costs, added transportation costs, adaptive technology costs, etc.), these pay disparities are extra damaging to the livelihoods and independence of disabled people everywhere. It’s worth noting, too, that these numbers can even be worse for disabled women and disabled people of color, as they also face the additional gender and racial pay gaps, too.
There are many reasons for these pay disparities. To fully grasp the heart of this issue, though, we must shed light on some of the ableist viewpoints that have made the disability pay gap what it is today:
Ableist Myth #1
— “Paying a disabled employee less is okay because a disabled person is not as productive as a non-disabled person.” This myth is the cornerstone of the disability pay gap. Despite some evidence to the contrary, most don’t believe disabled workers are as productive as their able-bodied counterparts. So, this notion is used to justify lower pay for disabled people.
Ableist Myth #2
— “Disabled people get lots of help from the government, so there is no need to pay them the same as non-disabled people.” The myth is a double-edged sword. First of all, not all disabled people qualify for disability benefits. Secondly, for those that do qualify for assistance, the broken benefit system forces the disabled to subsist on poverty-level (and often sub-poverty level) resources and aid. So, what the disabled actually receive from these programs is far less than society believes.
Ableist Myth #3
— “I’m doing the disabled person a favor by hiring them in the first place. So, to expect me to pay them the same as a non-disabled employee is just asking for too much.” There is a lot to unpack in this. In fact, there’s so much to dissect that we’d need a steamer trunk and three overnight bags to fit it all. But, at its core— this is Ableism 101. And disabled folks have been hearing stuff like this for decades. Society’s view of a disabled person’s worth and potential is often so compromised by generations of ableism that even imagining that they should pay a disabled person the same as a nondisabled person feels unreasonable and demanding.
Ableist Myth #4
— “If I hire a disabled employee, they’ll just end up suing me for something… and I just don’t want to deal with that.” There is a pervasive myth that disabled people are litigious— whether it be suing businesses for ADA violations or suing employers for discrimination. But, in reality, it is very difficult for a disabled person to sue anyone for anything. As lawyers work on contingency, and lawsuits are arduous and expensive, such legal actions are out-of-reach for the vast majority of disabled people. So, these lawsuits just don’t happen— especially on the scale that people think they do.
Ableist Myth #5
— “Sure, in theory, it would be nice to hire a disabled person, but they just aren’t qualified for this job.” This myth is very widely believed, and by people who, in many ways, want to do the right thing and be ‘inclusive.’ But ableism can be a tricky and insidious thing, often overriding all else— even well-meaning intentions. Of course, this myth also has it wrong. In reality, disabled people are more often overqualified for the jobs they seek. Given the pervasiveness of ableism and discrimination, disabled folks are driven to accept jobs that are beneath their capabilities. And at a lower pay rate, of course. They are also forced to seek advanced degrees and other qualifications or certifications in order to try to stand out in the applicant pool— knowing full well that being disabled is a mark against them.
These myths are just a small glimpse of the ones floating out in the world. You’ve probably heard variations of these, but possibly never had need to examine the impact such misconceptions could have on others.
Now that we’ve learned more about the disability pay gap, we can look to see what we can do to help. After all, it will take lots of allies to unravel these foundational disparities. First of all, we must vote for candidates that support disability rights issues. Read their platforms. Make sure they are actively seeking policy change in these areas. And we need to hold them accountable for it! Next, we must support businesses that hire disabled employees. Your dollar has power— use it wisely. Further, the barriers of finding and maintaining homecare can be a substantial challenge for disabled workers (something that is exacerbated by the pay gap, as well). So, we must tackle that issue, too, so as to fully support the disabled workforce.
Lastly, if you are an employer, there is a big thing you can do. Hire disabled employees!
It’s important to acknowledge that many disabled people are understandably cautious about the jobs they feel comfortable or safe pursuing. So, if you are an employer, perhaps you could add a line at the bottom of your job listings? Something like, “This is a disability-friendly workplace. Inclusivity is a top priority. We welcome people who share this goal.”
While seemingly a small gesture, this could be a signal that brings qualified and valuable applicants to your business. By including disabled workers in all employment-related discussions, you make your business more equitable and forward-thinking.
It’s a win-win for all.
So, let’s get started! Together, we can make these myths a thing of the past.
When you think about discrimination, what comes to mind? Take a moment to ponder it. In your mind’s eye, who do you picture being discriminated against? How does this discrimination manifest? Where does it happen? And, lastly, why does it happen?
I ask these questions because we all have preconceived notions about discrimination. We may think about racism. Or sexism. Or homophobia. Or religious persecution. Our shared history has taught us to recognize some, more blatant, forms of these discriminations— but, sadly, we have a long way to go to identify and rectify the consequences that have resulted from them.
But there is one “-ism” that very few people know about. In fact, if they’ve heard the word, they likely don’t even know what it means. Yet, it’s an “-ism” they’ve most likely witnessed, and, I daresay, even directly enabled at some point in their lives.
I’m talking about ableism. The textbook definition, itself, is even vague— as if the person writing for Oxford Dictionary wasn’t quite sure what it is, either:
discrimination in favor of able-bodied people.
No offense to the Oxford folks, but this definition isn’t helpful. Yet, oddly, the sparseness— the vagueness of it— and the fact that the definition doesn’t even mention the target of the discrimination… well, that says a LOT about how veiled and insidious ableism can be.
So, let’s expand this definition a little. Ableism is discrimination against people with disabilities based on the deep-seeded societal belief that they are inferior to the nondisabled. It is rooted in the long-held assumption that disabled people require ‘fixing,” and a notion that they are incapable of being full, independent members of society. Like other “-isms,” ableism classifies an entire group of people as ‘less than,’ and perpetuates harmful stereotypes and misconceptions of people with disabilities.
Ableism can occur in overt, obvious ways— through things like abuse, direct exclusion and denial of access. But, it’s the more subtle forms of ableism that can often be the most harmful to those with disabilities.
I am disabled. I’ve written about some of my life experiences here in this blog. Ableism is something I’ve quietly experienced my entire life— but during my younger years, I didn’t have the language or the ability to put it into words. Or, to really examine what I knew in my bones to be true:
Society saw me differently than others. I was measured to a different standard. Less was expected of me, yet I had to achieve FAR more to be taken seriously. To be heard. To be valued. I had to minimize my disability and shrink it down into the teeniest box imaginable. Even if I knew I couldn’t manage it. Even if I knew it wasn’t sustainable for me in the long run.
You see, ableism demands these things of the disabled. Because being less disabled means that society values you more. You will have more access to education, employment, and economic opportunity. You will be listened to— and you will have more access to the healthcare and community services you may need.
Society perpetuates these values day after day. Ableism is baked right into the foundation of it— like walnuts in a loaf of banana bread. It’s the reason why the disabled are always one of the first groups to suffer during times of upheaval, like the COVID-19 pandemic. Ableism teaches us that the disabled are more expendable than the able-bodied. We see those values playing out right now in real-time.
There are undercurrents of ableism in the protests to masking, vaccine requirements and other public health measures. These protocols serve to protect the disabled and vulnerable, but as many of these protesters see themselves as “healthy,” they don’t see why they must do these things. They subconsciously believe their rights and their value exceeds that of others. Why do they think this? It’s not simply a matter of “selfishness” or a lack of “morality” (that’s too simplistic, and also, untrue). You see, it’s ableism that justifies this position in their minds. Ableism is what subtly reinforces the idea that they are superior to the ones they are being asked to protect.
This dark side of ableism can be very dangerous for the disabled. For that reason, it’s the one that many people don’t like to talk about. It makes folks uncomfortable. After all, society is invested in the narrative that it “takes care” of the vulnerable among us. We want to think this is true. And, while we do great things to care for others (we really do!), we still have a long way to go to achieve equity for the disabled. To achieve full personhood for the disabled.
No discussion of ableism, however, can be complete without acknowledging the added barriers and discriminations that disabled people of color experience. All the challenges of getting access, accommodation and resources are exponentially compounded for the disabled in communities of color. This is why disabled people of color are in the highest mortality group for COVID-19. Ableism and racism can combine in ways that can be deadly. We must not be afraid to acknowledge this and address it. No work to combat ableism can be fruitful without efforts to tackle these added racial disparities.
The disability community needs allies in these efforts. Our voices, alone, won’t make things change. Do you want to do your part? If so, I recommend that you learn more about ableism— and all the ways it can show up in our daily lives. My explanation above is rudimentary, so there is much more to learn. Here are a few links to check out:
This brief list is just an entry point. After all, the disability community’s experience with ableism is as diverse as the community itself. Yet, there are commonalities that bind us together. So, your first step is learning to recognize ableism when you see it— because, trust me, you will see it.
And once you do see it, you will have no excuse not to do anything about it. The power to make change will then rest with you.
Let’s get started, shall we?
This holiday, I challenged myself to watch as many Christmas movies as possible— across all platforms (TV/streaming). Given we still live in a COVID hellscape, this seemed like the safest option for me. Here are my takeaways:
— In the battle between Lifetime & Hallmark, Lifetime takes the lead in diversity and inclusivity… while Hallmark seems afraid to diverge from plots of NYC ad executives looking to find their holiday mojo in a small town Christmas tree lot.
— Netflix has some good contenders in Single All The Way and Love Hard. (The Christmas Prince belongs in a dumpster.)
— Hulu surprised me with Happiest Season and No Sleep ‘Til Christmas… these are decent options if the usual holiday storylines make you bored and gassy.
— If you like reality TV, you’ll like HBOmax’s 12 Dates of Christmas. I hate dating shows, so it made me want to drink curdled eggnog just so I wouldn’t have to watch it anymore.
— Disney+ is your place for holiday classics that you watched in the 90’s. It was a simpler time when Tim Allen was still popular and Macaulay Culkin wasn’t a 40-year-old weirdo.
Anything I’ve missed? Do you have any Christmas movie suggestions for me?
Leave them in the comments below.
Hello, all! It’s me. I know it’s been months since I’ve written. I’ll fill you in on the reasons for that later (nothing bad!), but I just wanted to touch base to let you know that I’m not dead.
Also, please be assured that I haven’t done anything crazy in the interim, either.
#1. I haven’t joined a cult.
#2. I haven’t squandered $20M to go to space with Elon Musk.
#3. And I definitely haven’t joined a multi-level marketing scheme to sell organic lip balm to every single person I’ve known since 1997.
(Come to think of it, both #2 and #3 are also cults.)
Anyway, I just wanted to give you a short update on my latest project. A few months ago, Anthesis, an organization that serves developmentally disabled adults, asked me to come aboard as a contributing writer for their blog. It’s been a fun collaboration and I’m fully supportive of every attempt a company/organization makes to amplify disabled voices and perspectives.
You can check out my recent work for Anthesis by clicking on this link HERE.
More from me soon!!
As I type this post, a massive horde of cicada insects in the Eastern US are preparing to re-emerge into the world after a loooong 17-years underground. Cicadas are masters of the “long-engagement” and you know that old phrase, “absence makes the heart grow fonder?” Well, whoever wrote that clearly knew a lot about cicada romance. After waiting years for this day, when the cicadas of Brood X emerge in the coming weeks, they will convene the largest orgy known to mankind.
Cicadas will be everywhere. After breeding on a tree, they will fly a little way, and then breed again on a shrub. And then again on the roof of a corner liquor store. And then again in the parking lot.
I can’t help but feel there’s something metaphoric about this. That after a long year underground, humans are also primed to explode into the world in a rabid frenzy of unprotected sex and really bad decisions.
But, please, have some restraint, people. We are supposed to be more evolved than cicadas. Our brains are bigger. Our wings are smaller. So, we should have the ability to control ourselves.
Even though I’ve been vaccinated, as a person with a high-risk disability, COVID19 could still pose a danger to me. So, I will continue to observe health protocols in public until more folks are vaccinated. In consultation with my doctors, I’m also still navigating which activities are safe/not-safe for me to pursue. This list will probably evolve & grow over time— like a Chia Pet.
To be honest, from an emotional standpoint, it’s also hard for me to quickly re-calibrate after 15 months of quarantine. I’ve been living like a bearded hermit. The kind that stores root vegetables in the cellar and makes whiskey out of old Corn Nuts. So, unsurprisingly, it’s gonna take a LONG time before I’m partying at Coachella. Or sharing a triple-order of Taco Bell nachos with 9 fun strangers I met outside a public toilet.
I don’t have the ability to shift gears quickly. It’s just not in my nature. I’m not a cicada. So, I am taking this one step at a time.
Earlier this week, I went for my 16th injection of Spinraza. These vital treatments for my Spinal Muscular Atrophy have been the only times I’ve ventured out since the beginning of this pandemic. These procedures are challenging because it’s tricky to navigate a 5-inch needle into my spinal fluid. Especially since I’ve got a twisty torso and two metal bars fused to my vertebra. So, these injections can be difficult and arduous.
Given Stanford is a teaching facility, I never quite know which neuroradiology fellow will be performing my procedure. It’s like having tickets to a really great Broadway musical, but you’re not sure if you’re gonna see Idina Menzel or her understudy. While you hope it’s Idina, there’s really no guarantee… especially if she ate some bad falafel the night before.
As I lay on the gurney before the procedure, waiting to be taken back, the on-duty neuroradiology fellow will come to introduce themselves to me. Often, this is the first time I’ve EVER met them. So, as you can imagine, this is the moment where I begin to silently judge this person. Do they seem trustworthy & competent? Do they have enough experience? Can they sing a high E6 while wearing green makeup?
In the nearly 4 years that I’ve been on Spinraza, I’ve met a parade of neuroradiologists. And I’ve judged each and every one of them. There have been quiet ones, cocky ones, ones that remind me of Meredith from Grey’s Anatomy, and ones that were rooting around in my spine for SO damn long that I wanted to charge them rent. Fair-market rent, of course, but I’m worth at least the same as Marvin Gardens with a hotel.
This week, when I met the neuroradiologist, I instantly got a really good feeling. You see, I have a radar for these things. And not to brag, but, I could probably sniff out a good neuroradiologist faster than it would take a police dog to find cocaine in Matt Gaetz’s nightstand.
And my intuition was correct this time, too. This 2nd-year fellow was competent and confident (without being cocky!) and he had that needle in position so quickly I almost didn’t even notice the nerve ‘zing’ that shoots down my leg when the needle has properly entered the intrathecal sac— which is the desired bullseye in the game of Pin-The-Tail-On-Elizabette.
Before I knew it, my Spinraza infusion was in, I was back in my wheelchair and on my way home. To celebrate the smooth procedure, I did something that I haven’t done in over a year. Something that felt like a huge step forward.
I went to a drive-through & ordered chicken nuggets.
I decided I wanted nuggets, and I got nuggets— all in the span of about 5.7 minutes.
This might seem ordinary. This might seem mundane.
But, this was a big deal for me. You see, I have not been eating food prepared outside of my home. I have not had fast food, or a chicken nugget, in nearly a year and a half. While some people may have gained weight during this pandemic, I actually lost weight. It’s amazing what just eating home-cooked meals and the on-going stress of fearing for your very life can do to a person.
So, instead of getting the 4-piece nuggets, I sprung for the 6-piece. My bony ass needed the extra calories. And those spicy nuggies were even better than I remembered.
As this summer begins, I plan to take more steps forward— maybe a trip to Target, or out for a smoothie with friends, or to an in-person book club meeting that’s not on Zoom. But, my ability to keep moving forward is conditioned on all of you doing your part, too.
So, be safe, be wise, and watch out for those cicadas.
Hi. It’s been months since I’ve written here and, frankly, I didn’t intend to let this much time go by. But, the days go by faster than you’d think when you’re a high-risk disabled person trying to survive a deadly pandemic. My days fill up with tasks that I’ve never had to do with such sustained, long-term diligence before. Daily, I find myself musing…
- Do I have enough PPE, masks, hand-soap, and hand sanitizer for me and for my home care assistants for the rest of the month? (Or will the masks be snatched up by the assholes in Idaho using them for kindling on the steps of the state capitol?)
- When was the last time we wiped that doorknob?
- Did I remember to include everything I’ll need for the next two weeks in my grocery order?
And, the most frequent thought of all…
- Dear God, please don’t let one of my caregivers get COVID.
These questions, and hundreds just like them, have swirled relentlessly in my head for months on end. As I’ve written here before, this pandemic was a doomsday scenario that many of us with high-risk disabilities have, unfortunately, been preparing for our entire lives. So, the skills we’ve been forced to cultivate have come in handy in the last year. But, that doesn’t make it all any less exhausting or scary.
To give you an idea of what it has felt like: imagine you’re scurrying about, living your life, trying to get everything done, when suddenly, a giant ACME Looney Tunes hatchet materializes and suspends itself over your head. And begins following you around for 12 months— the sharp blade gleaming in the sunlight.
That’s what this pandemic has felt like to me… and to countless other disabled and high-risk individuals.
I’ve been told “it’s wrong to live in fear” — a narrative spouted most especially by those that are able-bodied and think the virus poses no risk to them… folks that are looking for a reason to dismiss the risk, to continue doing whatever they want, and to flip a metaphorical middle-finger at anyone telling them differently. But, this virus doesn’t discriminate— and I’m sorry, but I take little credence from folks that don’t know what it feels like to be on a ventilator, to have a suction tube shoved down their trachea, or the terrifying feeling when fluid builds in your lungs and you struggle and struggle to cough it out. People that don’t know what that feels like have no business telling other people what they should, or shouldn’t, fear.
The brilliant and eloquent disability advocate Imani Barbarin recently wrote of the pandemic:
“I knew people were comfortable watching disabled and elderly people die, but I was wholly unprepared with the joy with which people would leap into harm’s way under the belief that only the vulnerable would die.”
Despite the very real danger the virus poses to us, and the fact we have been sheltering longer than any other group, the disabled are still not prioritized for the COVID vaccine in many, many places. This needs to change. Several weeks ago, I was extremely fortunate to receive the COVID vaccine. This wasn’t because I was officially prioritized (I wasn’t!) it was solely due to the fact that I was lucky enough to have caring medical professionals that fought really hard for me once a vaccine shipment arrived in my area. This happenstance, this luck, this privilege, should not be the way that a disabled person, like me, gets the vaccine. For &%$@’s sake, I have a hard time coughing out a loogie, I should not be forced to get a leftover dose of COVID vaccine out the backdoor of a clinic at 7pm on a cold night. That’s how El Chapo makes a deal for 89 kilos of cocaine— not how a crippled girl with 42% lung capacity should be getting a COVID vaccination.
And what about the countless other disabled people (especially disabled people of color) that don’t have ready-access to a doctor or medical professional with the time or ability to help them navigate these very real hurdles? I was fortunate & privileged to get the vaccine when I did— many, many other disabled people aren’t so lucky.
That said, I’m glad, though, to see vaccinations are expanding to essential groups, like agriculture & food workers, school staff, and other essential personnel. This progress is vital for us all— the only way for our society (and the world!) to get a handle on this virus is for as many people to get vaccinated as possible.
And that includes you.
I don’t care if you saw a “really scientific” blog posted by your friend Cassie on Facebook claiming that the vaccine will turn your reproductive organs into lemon-flavored jellybeans.
I don’t care if you think COVID is “no big deal.”
I don’t care that your gym trainer saw a “super believable” TikTok that said the vaccine will mutate your DNA as if a radioactive probe had been placed up your anus.
When the vaccine is available to you— get it!!
And don’t forget one more thing: never before in medical history have we seen scientists from around the world coming together for one purpose. There has been unprecedented, historic cooperation on these COVID vaccines. So, it’s important that we don’t falsely compare the timeline on these to other vaccines of the past. Other vaccines have taken longer to produce because they haven’t had the sheer number of scientists working on them. They haven’t had the resources to devote to it. To test it. To evaluate it. Other scientists of the past have had to balance other experiments, and research, at the same time. This wasn’t the case now.
To use an analogy: Two carpenters decide to build a hotel with 50 rooms. They have to build it all on their own because no one else will help and they have to be as cost-effective as possible because their boss offers minimal support and funds. Plus, they have other part-time construction jobs, too. So, it takes them 3 years to build the hotel all on their own.
Compare that to 25 carpenters that get together and decide to build a hotel with 50 rooms. Their boss gives them oodles of support, resources, half-finished blueprints, and extra staff. Working full-time, they build the hotel in 3 months.
How can someone say that the second hotel was built “too fast” when the builders had so much more help, time, and resources to devote to it?
In truth, you simply can’t compare them.
Lastly, I hate to be the one to break it to you… but COVID is not going away. The virus won’t just pack up and move to Costa Rica like your kooky neighbor Larry because he thought America was turning into a Dr. Seuss-hating, communist shithole.
It’s here to stay.
So, the more immunity we all collectively build against this virus, the slower the spread, and the less mutating it will do. For those of you that have had COVID, or don’t think the virus will do you long-term harm, you should know that getting sick with COVID results in far fewer immune antibodies than is produced by the vaccine. So, being unvaccinated, you will get COVID again sooner, potentially more severely, and likely shed more virus particles to those around you— like a drunk 22-year-old flinging contaminated beads at Mardi Gras.
And there are many people out there, like me, who are counting on you to not to be a sloppy, inebriated frat boy.
So, don’t be.