It's natural for parents to want their children to reach their full potential. But who decides what that is? And at what cost?

In part two of my interview with Heather Trammell, we explore how dangerous societal expectations can be; and how inaccurate and harmful it is to label people as high-functioning and low-functioning. (You can listen to Part 1 here!)

 

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. 

 

SHOW NOTES:

Heather Trammell is the Director of Family Support at the Down Syndrome Association of Northern Virginia. She took on that role after her first child was born with Down syndrome more than 20 years ago. 

Freebird - the award winning short film Heather mentioning in the episode. It is a MUST watch.

More about IDEA - the Individuals with Disabilities Education Act.

More about the ADA - the Americans with Disabilities Act.

 

 

TRANSCRIPT

01:00:07 :18 - 01:00:36 :21

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. I was lucky enough to head down this less traveled road when my first child was born with Down Syndrome in 2010. Now I work with the Center for Family Involvement at VCU's Partnership for People with Disabilities.

 

01:00:37 :11 - 01:01:01 :24

Erin Croyle

This podcast explores the triumphs and the hardships we face. We celebrate the joys that the odyssey of parenting, caregiving and disability bring. But we tackle the tough stuff too, which is why I've invited Heather Trammell to join us. Heather knows hard. She too has a child with Down syndrome. And how the medical team broke that news to her is both shocking and heartbreaking.

 

01:01:02 :14 - 01:01:30 :20

Erin Croyle

After the dust settled, Heather became the director of Family Support at the Down Syndrome Association of Northern Virginia. She's one of the first people that parents talk to after they learned their child has Down syndrome. She sees firsthand how drastic different families handle diagnoses. Heather's also a powerful advocate for acceptance of all abilities so often the disability community showcases exceptional individuals.

 

01:01:31 :05 - 01:02:01 :21

Erin Croyle

These people certainly should be celebrated. In doing so, though, are we perpetuating the offensive and inaccurate idea that some people are high functioning and others low functioning? We're going to get into all of this and so much more. So let's get started. Heather, I am so excited you're here. I should add that this is part two of my conversation with Heather, a link to part one, What to Expect when the unexpected Happens is in the show notes.

 

01:02:02 :08 - 01:02:15 :19

Erin Croyle

Heather, this is something you've opened my eyes to and alluded to in part one. You're very outspoken about the harm that propping up and celebrating the best of the best of people with disabilities can do. Can you tell us more about that?

 

01:02:16 :00 - 01:02:43 :20

Heather Trammell

Yeah, I'm definitely seeing it. And I've seen it change a little bit over the years, too. So I think in the early years when success stories were shared through via newspaper Internet websites, whatever, it did some good and it still does some good to see representation in media, positive representation in media of people with disabilities. It really does.

 

01:02:44 :04 - 01:03:20 :19

Heather Trammell

I'm not saying it does nothing, but it's not a very complete picture either. I think sometimes, especially back in the day, we would see those stories and it would not naturally occurring to us to question whether that was the experience of every person with Down syndrome. We automatically assume that it could or should be. Every experience a person with Down syndrome, they all should get to be homecoming kings.

 

01:03:21 :03 - 01:03:47 :19

Heather Trammell

They all should do this or do that, graduate from high school, etc. They all should do this. I don't think we question it as much. But then I think now we question those more. I think we we ask ourselves, is inspiration pouring okay, now and back then we can ask ourselves whether it was okay, we just did it.

 

01:03:48 :05 - 01:04:16 :14

Heather Trammell

Now, mind you, my child was born. There was the early 2000s. We were coming out of the 1990s 1980s where positive thinking, let alone positive representation of people with Down syndrome and disabilities wasn't out there hardly at all. Remember, idea was a long till 1970, I think five, right? At the ADA, it was never. Was it always on the books?

 

01:04:16 :19 - 01:04:41 :18

Heather Trammell

I mean, positive thinking about people with guns and girls wasn't a norm. And so I think people were glad to put that kind of stuff out there. But I think we can't get over or rely on it. And we we forgot that human nature doesn't naturally get curious about stuff. Human nature would normally bend towards us not being curious.

 

01:04:42 :00 - 01:05:07 :07

Heather Trammell

We wouldn't ask ourselves because every person with Down syndrome experienced this. Maybe, maybe not. What did those parents do that made their child so amazing? I don't think we were as curious back then. I don't think human nature is yet still as curious as we could be. Maybe it served a purpose for our time. I don't know that it serves every purpose.

 

01:05:09 :09 - 01:05:36 :00

Erin Croyle

Yeah. I mean, I feel one could argue that it's dangerous, that it implies that someone who isn't as advanced, if you will, isn't as worthy you alluded to in the first episode. And these terms are outdated now and we shouldn't use them. But in this context, we're going to use them high functioning and low functioning. Can you go into that a little bit more?

 

01:05:36 :12 - 01:06:01 :21

Heather Trammell

I wish they were more outdated than they are those terms, but yet I hear them quite often. I hear it in both the communities that I set my fucking through, both autism and in Down Syndrome. I think one of the things that makes those really harmful is I think when we categorize people with that like that, first of all, we detract from their humanity.

 

01:06:02 :07 - 01:06:26 :00

Heather Trammell

That you can have a good day and a bad day. I have good days and bad days. I do taekwondo and CrossFit, and I'll tell you, some days I'm on the white board. I'm doing great. Some days I land the head shut and some days I don't. You know, am I a high functioning person or a low functioning person?

 

01:06:26 :17 - 01:06:50 :10

Heather Trammell

Well, some days I'm great. Some days are not. So I think it does a disservice that way because we're not letting people be human. We're not letting people have good days and bad days. We're categorizing them by how much we get from them if they meet our needs, if they line up on our dotted line and make it easier for us.

 

01:06:50 :16 - 01:07:18 :07

Heather Trammell

They must be high functioning. Mhm. And, and if they're not then they're low. So my daughter with Down syndrome can do X and Y and Z. And her friend with Down syndrome cannot. We don't ask ourselves who's more wo