Something that haunts me: years ago my mom, an alcoholic, went to rehab to get clean. My grandparents who grew up soaked in alcohol culture —prolific partiers/socialites their entire lives —went sober in solidarity.
Except it turns out they didn’t…🧵 (an essay on access)
My great grandparents on both the Polish/Russian & Swedish sides (1st gen immigrants) were allegedly infamous bootleggers in Chicago. That’s the environment my grandparents grew up in.
My grandpa was roommates with Hugh Hefner in college. Yeah, that Hugh Hefner. Yeah, when he started Playboy magazine. In the 50s & 60s, my grandpa and his business associates/friends rolled with the likes of Hefner & The Rat Pack.
In their day partying was key to business success. My charming grandpa worked his way up from poor Swedish immigrant to CEO of a major insurance company. Alcohol culture lubricated his success. Here they are at the grand opening of his friend Hefner’s Playboy Club in 1960.
After they died, & long after my mom got sober (from alcohol, not drugs, but that’s another story), I was the responsible, sober granddaughter in the shitshow of my family drama. So I had to go through their stuff to prepare for the estate sale.
Guess what we found? A massive hidden trove of alcohol behind a secret wall panel. Enough to run a speakeasy out of their suburban garage.
And they kept that secret from my mom for like 50 years. She even lived with them during much of that time! None of us knew! 🤯
And I think about this in relation to “disability accommodations,” or “accessibility needs,” or what I argue are just needs. My mom said she couldn’t be around drinking or alcohol. This was a sobriety access need. So my grandparents re-organized their entire lives around that.
Never saw my grandparents drink. Not once. Because my mom was often in rehab or jail or treatment, & my dad worked absurd hours to keep us afloat, I spent much of my childhood with my grandparents. It baffles me how they kept their drinking & secret stash so discrete!
I also think of how my dad w/ ALS couldn’t talk, & my deaf grandpa couldn’t hear. They joked they had the “perfect friendship.” But they truly did! My dad wrote to communicate, very slowly due to the muscle atrophy. Few nondisabled folks patient enough to “listen.”
My witty grandpa was often excluded from conversation because people were not patient enough to repeat themselves louder (he had a hearing aid, ASL was never an option). When he & my dad were together, they could slow down. Be understood.
And my deaf grandpa & hearing grandma developed their own system of communication: broom thuds. E.g. when dinner was ready she would thud 3x on the kitchen floor with a broom handle (2nd floor) so my grandpa (working downstairs) would feel the vibrations & go up to eat.
If she needed help, there would be more thuds at a faster pace. If emergency was happening — like when I had an asthma attack! —she would rapid fire a lot of thuds in a row. This meant “hurry the fuck up!!!” Their love language was very loud! 😂
So when I see people who won’t wear a mask to protect me, or make any efforts at access, I feel really sad for them. They must never have seen modeled what real care can look like. Not a sacrifice, but an adaptation. Growing to fit the contours of the people you care about.
Because when you love someone, you want to be with them. You want to understand and care for them. The what/how of the activity —what you wear or drink, how fast you talk — is less important than the who. Truly being together means a good faith effort to meet everyone’s needs.
Together comes from the Old English “tōgædere”: to gather. To gather is to shed individualism for the collective. To think as many rather than one; to include the needs of everyone in the group. When I think of “together,” I think of my few happy memories of family gatherings.
The location: wheelchair accessible for my dad. No alcohol to protect my mom’s sobriety. Everyone hushing when my dad wrote on his pad. My grandpa reading it aloud, with dramatic affect, making everyone laugh because he understood best my dad’s sharp humor.
Everyone in my family is a loud talker. My husband has to warn me all the time to lower my volume, “use your inside voice,” because I talk VERY LOUDLY. And the reason for this is because my grandpa always asked me to talk louder. I adapted to his needs. Proud of my voice!
Now I understand all of this as disability access. It wasn’t hard. It flowed naturally, for the most part. It was just part of love. My family was dysfunctional in many other ways but this was an example of their love that stuck with me.
While access flowed naturally in my family, not so in the wider world. Like when a carefully planned picnic at the park was ruined because some asshole parked on the white stripes next to the ADA space & so my dad couldn’t lower the ramp to get his wheelchair out.
Luckily most people learned quickly. My dad had the patience of a saint and took the time to educate people about his needs, about the ADA, about the way people’s behavior could affect others positively or negatively. He modeled for me what it means to be an advocate.
My dad is long dead. But I think all the time how much harder it would have been for him in this world. It seems meaner now. Like people see anyone that slows them down or asks them to adjust, even slightly, as disposable. Wearing a mask is so easy!
A former extrovert like my grandpa, now I’m mostly alone b/c people deny me access. It hurts. I spend more time with the dead than the living. But ghosts are good company. They teach me to be in the world in a way that’s different. To move in love. “Access is love” — @SFdirewolf
Sorry this should read *like 30 years. I miscalculated time 😫
@SFdirewolf Another correction: they kept it a secret from my mom for like *30 years. I miscalculated time 😫 my apologies for this and for getting confused about origins of “Access is love” movement
Hefner was a r*pist. My inclusion of him in this story is not an endorsement but to shorthand the kind of party culture my grandpa was a part of. As a SH/A survivor, the longer Playboy thread is a *different* story I am not ready to tell.
I am adding this context because some people are coming in hot and aggressive that I mentioned Hefner, even after acknowledging this crucial history. Sorry, even feel good stories sometimes include people who do bad things.
Part of addressing r*pe culture is acknowledging the ways it weaves throughout our lives. And maybe one day I will tell that story. But today is not that day & an access need for me & my PTSD is blocking trolls who attack me in bad faith. Constructive critique welcomed, though
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that was awkward. The pharmacist filling my prescription was none other than… a former student I wrote a letter of rec for pharmacy school! She is about to graduate with her PharmD. She said “you were my favorite professor!” as she handed me the sex drug
“I’m so proud of you!” I said, “& so embarrassed that this is how our paths crossed again!”
“Do you want me to go over this with you?”
“No, I’m good, thank you!”
Still I’m so stoked for her! And laughing. Because of course.
Actually I think my story is less embarrassing than the time I was in the locker room at the university gym & a very not-shy emeritus professor struck up a conversation with me while she was totally naked
3-6 years old. My dad pulling me in a radio flyer wagon on his daily 5 mile run. He turns around and smiles back at me. “One day you’ll be a runner like me.”
8 years old. Running with him now. Struggling to keep up. “One day you’ll outrun me.” 🧵
10. On trails through the redwoods. Leaping over roots & brushing ferns. Playing the plant identification game. If I get enough right, we get ice cream on the way home.
“Uhhh… myosotis… laxa?”
“Common name?”
“Forget-me-not.”
“Ding ding ding!”
One day he stumbles on the trail. He falls a lot now. This time his arm— which hangs limply at his side, its muscles refusing their duty—doesn’t move to catch him. Blood on his face, elbows, and shin.
“Sorry kiddo, your old man isn’t feeling so great. Let’s walk home this time.”
Sometimes I wonder what it must be like to go through [insert deeply painful event] & be able to find comfort in hugs from parents, siblings, partners, or friends
Pain on pain being reminded that I’m all alone with every struggle, and those who hurt me are being held
What is it like to know that, when all else falls away, you can seek shelter with family?
The only place left for me — and many like me —is the street
Some comfort: thus far I have navigated my life alone. What a testament to my perseverance & intellect! Full agency over my life — no familial support, but also no obligations —
Despite the lack of love, I have chosen to be a loving person who plants flowers wherever I go
When I was a community college student (18) my International Communication Professor paired me with an older, VERY handsome fellow student (30s) from Bulgaria. Our assignment? To teach each other about our cultures, then share what we learned with the class. TW: trauma
So Yuri* (name changed for his protection) taught me the beauty of Bulgaria. He explained they have this massive, opulent rose festival, where his home city is filled with beautiful people & the perfume of colorful roses
He walked me through some of the traditional dance moves. Showed me the costumes. Let me smell some fancy, pungent rose concentrate he smuggled to America with him. Made me rose tea.
Something I’ve been reluctant to share b/c I don’t want to platform eugenicist rhetoric… but it’s important to note that the architects of eugenics thought specifically dreamed of pandemics as a means to rid society of “worthless race types” “the insane” and disabled. (1/5)
This is from Madison Grant’s The Passing of the Great Race (1916), arguably one of the most influential pieces of eugenics propaganda. So influential, in fact, that Hitler quoted it as his “Bible” & Teddy Roosevelt used its race rubrics to craft anti-immigration policies. (2/
I share this to show that those exposing disabled people to disease are straight up parroting & practicing eugenics. When they call us “insane” or “unhinged” & mock us for masking, they are peddling in eugenics dehumanization. Language co-constitutes action. (3/
Covid-competent people: does anyone have a resource for “how to live like a covid-competent person” basics? Like broken down Barney-style?
Someone in a position of power who wants to date me is open to learning, and I want to take this opportunity to radicalize them.
I started with the info about ED (lol), then moved onto the other health risks (they have lung disease), explained asymptomatic & presymptomatic transmission, airborne transmission, but I think it would be helpful to have a little booklet or something to refer to.
Premise: Covid still poses a threat for X, Y, & Z reasons. It is transmitted through shared air, like smoke. To mitigate that threat, we must
1. Wear N95 or better respirators indoors and around others at all times 2. Improve ventilation via open windows, fans, & filters