We're trying something different this episode: our first ever anonymous "airing of grievances."

Many of us exist in our own information bubbles, completely ignorant of what those around us might be going through. This is especially true for people with disabilities and the family, friends, and professionals who love and support them. 

When The Odyssey's creator and host Erin Croyle asked, "What is something you wish others understood about your experience that you don't (or can't) talk about publicly?" - folks did NOT hold back. 

What about you? What secrets do you wish you could share?

 

The Odyssey: Parenting. Caregiving. Disability. 

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you. 

 

TRANSCRIPTION:

01:00:06 :19 - 01:00:36 :11

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host of the Odyssey podcast explores how our lives change when a loved one has a disability. I was lucky enough to join the club, so to speak, when my first child was born with Down's syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

 

01:00:36 :13 - 01:01:03 :16

Erin Croyle

One of the mantras often shared in the Down's Syndrome community is more alike than different. While that is absolutely true for humans across the board, disabled or not, we do ourselves a disservice by not acknowledging how different our life experiences are. I've felt this deeply over the years. The society we live in, not just in the United States but globally, fails at understanding and accepting disability.

 

01:01:03 :18 - 01:01:35 :14

Erin Croyle

It's often viewed as something to fix or overcome, which is often impossible, usually unnecessary and frankly, ridiculous and insulting. Disability is one of the many things that makes us who we are. It is natural and normal. The daily struggle that people with disabilities and their families face is exhausting. It's not just about those shopping carts we see left in accessible spaces or having someone drop the R word and mixed company as if it's as innocuous as talking about the weather.

 

01:01:35 :16 - 01:02:04 :18

Erin Croyle

It's that loneliness we feel because many of the hardships we face are so private and painful that we don't speak of them. Out of respect for a child's autonomy or because we don't want to rehash it, it's the blatant ableism embedded in our systems and mindsets. It's painful microaggressions that slide largely under the radar. But not today. In honor of Festivus, I've reached out to peers who are impacted by disability.

 

01:02:04 :20 - 01:02:21 :05

Erin Croyle

For an anonymous airing of grievances, asking them what they wish others understood about their experiences, that is rarely mentioned in the public arena.

 

01:02:21 :07 - 01:02:45 :01

Erin Croyle

My husband and I are the youngest in each of our families. We became an aunt and an uncle before we became parents. And as I mentioned, I'm pretty much every podcast. Arlo, our first child, has multiple disabilities and medical complexities. Down syndrome is just the most obvious. Observing the family and friend dynamics over the years has been interesting, to say the least.

 

01:02:45 :03 - 01:03:13 :14

Erin Croyle

Arlo is more alike than different for sure, but yeesh, the way people react to him or treat him ranges from weird to downright unacceptable. The times I've tried to address the able ism we experience in our own inner circle has been met with hostility. Over the years, I've learned to just avoid certain situations and people, especially since my own neurodiversity and mama bear rage, makes it hard to simply bite my tongue.

 

01:03:13 :16 - 01:03:45 :13

Erin Croyle

And that brings us to the heart of today's episode an airing of grievances just in time for Festivus. Festivus, for those who don't know, is a secular holiday celebrated on December 23rd. Festivus came into the mainstream thanks to the sitcom Seinfeld and an episode that aired in 1997, The character Frank Costanza, played by comedy legend Jerry Stiller, delivers the iconic motto, A Festivus for the rest of us.

 

01:03:45 :15 - 01:04:14 :11

Erin Croyle

What I did not know until working on this episode is that Festivus is an actual holiday. It's based on a tradition that one of the Seinfeld show writers, fathers invented as early as 1966. For this episode of The Odyssey, There will be no flagpole and no feats of strength. Wrestling matches. Instead, it's an honest, real and raw airing of grievances, but also pain, joy and humor.

 

01:04:14 :13 - 01:04:48 :13

Erin Croyle

Because sometimes the things that are better left unsaid are also things that others need to know if they want to be fully present in our lives. This isn't just a bit an a complaint session. It's a window into our lives that we're putting out there in hopes to cultivate empathy and understanding. So without further ado, I will be reading what my friends and colleagues shared when I asked them What is something you wish others understood about your experience that you don't talk about?

 

01:04:48 :15 - 01:05:14 :09

Erin Croyle

One person shared, I wish my family and friends didn't get upset if we have to deviate from the plan. Even with the best of plans and forethought. Things come up. Being flexible is necessary. While they may be upset because they have to adjust one moment in time, I've had to adjust my whole life to accommodate my child. You're going to be okay if you just do it once in a while.

 

01:05:14 :11 - 01:05:37 :14

Erin Croyle

Another person says, Even though I rarely say yes, it means a lot to be included. So please keep inviting me to gatherings and maybe one day I'll surprise you. But if I don't know that I'm there in spirit, we all say the wrong things from time to time. Please don't avoid my family because you don't know what to say.

 

01:05:37 :16 - 01:06:05 :05

Erin Croyle

I'm working to overcome my own embolism every day. I'm ashamed about some of the thoughts that pop into my head. It's not our fault. We're conditioned to see people with disabilities as less than or other. Rather than tiptoe around it. Can we just talk about it? Stop being afraid to ask me uncomfortable questions. And if I correct you for saying something offensive, please treat it as a learning experience and react with curiosity and kindness.

 

01:06:05 :07 - 01:06:30 :14

Erin Croyle

Even if I'm not being particularly kind myself, it's hard to always offer grace and understanding when our children are still subjected to eugenics and no one blinks an eye. Just because you can't understand how I feel doesn't mean how I feel is wrong or doesn't matter. Dismissing my requests or concerns, causes me to feel like I don't matter and I'm not being heard.

 

01:06:30 :16 - 01:06:57 :11

Erin Croyle

Being different is not wrong. No one else will ever understand my struggles, but it would be nice if that was acknowledged. The following is from a person with an invisible disability who has worked with people with disabilities their entire life, both in volunteer work and actual employment. They also have a brother with multiple disabilities and they shared six different items.

 

01:06:57 :12 - 01:07:28 :02

Erin Croyle

Number one. Not every disability is visible or even noticeable to even high functioning individuals can have disabilities, both physical and mental health oriented. Three siblings can be some of the greatest support for individuals with disabilities, but are so often overlooked. Number four siblings can also feel the pressure from parents because they are, quote unquote, the normal ones. At the same time, they can feel ignored.

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