Thread by @FeralHeather

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 Correction:

https://twitter.com/sfdirewolf/status/1757491014934392958

@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



disabilityvisibilityproject.com/2019/02/01/acc…
disabilityintersectionalitysummit.com/access-is-love/
leavingevidence.wordpress.com/2018/11/03/dis…

further info: CW: SA

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