Pigeonhole Podcast 15: The Disabled Caregiver


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A story of culture, chronic illness, disability, love, and rye bread.

Nancy Sanchez gives a glimpse into the many layers of ableism in her life, from being called a faker as a child to people saying that caring for her sick father later in life was making her too sick to keep caring for him. She explores her Sicilian culture and how the collectivist way she was raised means everyone cares for everyone in the family, in sickness and in health.

Brittin Oakman’s poem below, although it’s about anxiety, really fits, I think. Because when enough people tell you the way you’re being sick is wrong, the way you’re caring for yourself is wrong, and the way you keep yourself busy is wrong (like Nancy faced), they shouldn’t be surprised if suddenly, you’re really busy all the time in ways they can’t detect.

A poem: I lied and said I was busy. I was busy; but not in a way most people understand. I was busy taking deeper breaths. I was busy silencing irrational thoughts. I was busy calming a racing heart. I was busy telling myself I am okay. Sometimes, this is my busy--and I will not apologize for it. By b.oakman in "Anxiety Doesn't Knock First." A branch with flowers and leaves lines the bottom of the image.

Transcript

Pigeonhole Episode 15

[bright ambient music]

CHORUS OF VOICES: Pigeonholed, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole.

NANCY SANCHEZ: Sometimes I completely forget to introduce myself! [tarantella led by accordion plays for the rest of Nancy’s introduction.] My name is Nancy Sanchez. My mom is Sicilian American, and my dad was an Irish English blend. My mom was a stay-at-home mom, so it’s so much of the Sicilian culture, it’s always forefront for me.

I say Sicilian, and then I say Italian. And so, I identify as Sicilian. You know, there it is: it’s an island. So, it has its own identity, culture, and a lot of pride. Then you come, and everybody sort of gets lumped into one thing, you know, Italian American. And yeah, nothing against Italian Americans but…Sicilian is Sicilian!

I always like to talk about my culture, being Sicilian American. I find it to be so integral to my identity to the point that I think I can be kind of annoying about it, you know? But I always include that in some part of my introduction.

So, Sicilians are very collectivist: what’s good for the group, what’s good for the family, you know, how we give care, how we receive care. And then there’s the food: it’s delicious. [laughs] Right? Anything that my mom cooks is obviously the best. [sauce simmering, food sizzling on the stove, sounds of the kitchen.] When you’re cooking sauce at home from scratch, it is acceptable periodically to dip in some nice, good Italian bread. My dad liked rye bread. So, my dad would dip rye bread into the sauce. And you might not have known that he was doing it if you didn’t see him, but you always knew when my mother came to the pot: “What are all these seeds doing in my sauce?! Oh my god!” [chuckles] But you know what? He would sneak us a piece. Surprisingly good! Yeah. I shouldn’t confess, but it was pretty good. Yeah, it was pretty good.

[kitchen and cooking sounds fade out as ambient electronica music fades in]

I’d been always sick as a child, and then I wasn’t diagnosed until I was 18 years old. When I was younger, the doctor we had, had told my mom at one time that I was probably making it up because we were Italian, and I probably liked to stay home and be with my mom. Actually said to my mom! Actually said my mom. By the time I was 18, a new doctor had taken over. I had a really bad asthma attack. And I walked into his office, and he said, “Uh, you have asthma.” It was such a wave of relief.

I mean if you have a really bad asthma attack, you could have such a life threatening problem. But to have the name? OK. So, now we know I’m not making it up. Things I knew anyway anyway, right? Things my parents knew anyway. It legitimized me. “Uh-huh. She’s not a faker. Uh-huh.”

[electronica fades out]

When I was 24, my dad was diagnosed with brain cancer. In the years after that, he ended up having a total of three strokes. So, he was not well for 17 years, but he wasn’t always not well. I mean, he still dipped rye bread in the sauce [laughing] as long as he could. [laughs]

[bright electronic music fades in]

I’d be taking care of him, but I’d also be quite sick myself. It sort of shifted from faking to, “Well, you’re not disabled enough. You’re just too stressed. That’s the reason you’re getting sick. Well, you need to stop doing that. Well, isn’t there anybody else who can do that? Well, are you guys making the right choices for your dad? You need to put yourself first. You shouldn’t be doing this caretaking.” I did not like the narrative that said your dad’s making you sick. But it was a reality that that would take a lot of spoons, and then you know, I would get sick from that.

[music fades out]

I would oftentimes not tell people what was going on with my dad. I wouldn’t tell them what was going on with me. Sometimes I would lie because I didn’t wanna keep hearing the same story over and over again. It was either the super ableist, “What an angel you are! Oh, you’re gonna get your wings in heaven.” Or, “Maybe you ought to think about a home for your dad,” right? And for some people that is an acceptable option. Not for us, not in our culture. That was not an acceptable option for us. He also wanted to be social. He didn’t wanna constantly be the patient.

For my Sicilian family, it’s important to keep your inner circle, right? You make sure that everybody is doing well. You make sure that everybody’s needs are getting met. You know that somebody’s also looking out for you. You know that somebody’s also helping you. I’ve heard comments like it’s sort of a selfish setup; it’s a selfish dynamic. Too much is being asked of you. But by the same token, all this stuff is flowing in your direction as well.

[tarantella returns and plays to the end]

It was tumultuous. We were thrown into this thing. That’s my dad, and I’m the daughter. And I’m the oldest daughter. And that’s my culture, and that’s what we do. I mean that’s just what we do. That’s just the way it is.

[upbeat theme music]

CHERYL: Every episode is transcribed. Links, guest info, and transcripts are all at www.whoamitostopit.com, my disability arts blog. I’m Cheryl, and…

TWO VOICES: this is Pigeonhole.

CHERYL: Pigeonhole: Don’t sit where society puts you.

[bright ambient music]

Music in the episode: “Ballerina Platform Shoes (Set In Sand Remix)” by Origamibiro. (Source: freemusicarchive.org. Licensed under Attribution-Noncommercial-Share Alike 3.0 United States License.)

“Bushwick Tarantella” Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License.

“Transitioning” by Lee Rosevere. (Source: freemusicarchive.org. Licensed under a Attribution-NonCommercial License.)

Sounds from Stevious42 and Ultradust. (Source: freesound.org. This work is licensed under the Attribution License.)

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