Life In The Heart Land

(gentle music) >>It's so nice and quiet.

You can access nature so quickly.

>>Think of it as like your own biosphere, like there's nothing else going on that really matters once you're out here.

Are you sure these tall ones are the ones we planted?

I don't think they grew that fast.

>>That can all make living in Appalachia really beautiful as an autistic person, as a disabled person, but you're very much dependent on your family and your community to support you.

You kind of have to figure out how to stay within the bounds of what they find are acceptable.

>>Look this way, act this way.

Don't sign, don't flail around.

I don't fit in anyone's box and how many countless other people don't fit in the box?

>>If you can't establish these friendships, that's so difficult, because out here, you depend on your neighbors to help you out when a storm comes through.

>>If you live in a rural community, not only might you experience these great difficulties in accessing resources, but you are part of a community that tends to be written off.

>>Any one of us can make a choice to live in a rural setting.

To suggest that being in an urban setting is inherently more inclusive, is really shortsighted.

>>We need to look at just how difficult we are making life for autistic people.

Otherwise, we can't fix it.

>>The stories of our community building, the stories that are not rooted in, or about just our trauma, also deserve to be told.

The heartland We rely on ourselves And one another hand in hand We must stand in the heart land >>Production funding for "Life in the Heart Land" was provided by The Chrisman Family Foundation, and by... >>There is probably a stable three-ish percent of the population that is autistic.

This isn't an epidemic.

We're starting to actually identify people appropriately.

We're starting to realize these patterns, which frankly, us autistics are good at pattern recognition, so if you'd listen to us, we probably could have found them for you.

And the way that we've defined autism traditionally is what an external observer is going to see, not what the experience is like for us.

>>Come here.

>>As soon as I found out that I was autistic... No, don't melt.

It was a journey from there, figuring out how does this work?

What am I supposed to do?

Who am I?

I live on 46-acre property with my mom, my dad, my younger brother, five dogs and two cats.

Used to be a cow pasture.

It's taken a long time to clean it up and turn it to what it is now.

All right, let's see.

My welding bag, I'm gonna grab my fence tool.

Let me scooch by you.

Growing up, we were tossed out.

Tossed out the door, said, "Go play," and had to come up with stuff to do.

I usually came back covered head to foot in mud or thorns or stickers or whatever.

(fence clanking) (chainsaw buzzing) >>Lucian, he was a normal kid, other than the fact that he couldn't articulate words sometimes, right?

He couldn't get it out.

>>Watch out!

>>Trying to figure out why he wouldn't answer us was probably one of the biggest day-to-day interaction challenges.

>>I was spoiled a little bit, and I was acting out a lot.

You know what?

Every time.

When I was in trouble, I couldn't articulate what it was I did wrong, so I would just stand there and stare at you.

>>Your brain is operating differently.

For me, it's louder, it's brighter, textures are stronger.

Everything is turned up really high.

(video game clattering) >>I stem a lot, like I rock back and forth.

I tap myself.

I like to say words that I find interesting over and over and over and over and over.

Capitulate, capitulate, capitulate.

Yes.

Mathematical.

>>That's how it's done.

>>Non-autistic parents will often say something along the lines of people like Lydia XZ Brown are nothing like my child.

They don't really know about the issues facing people whose children have severe autism or profound autism.

(lively music) It is a false, but commonly held belief that autism exists on a linear spectrum.

On one end, you have a neurotypical quote, unquote, "normal person," and as you go down the spectrum, a person goes from being very mildly autistic, higher support needs, and then they go down to become more severe or lower functioning.

In reality, any particular trait or characteristic does not necessarily correlate with any other trait.

But even beyond that, of course I'm not like your child.

Your child is eight years old.

>>I think about how hyper competent I am at work and how every day it is a constant struggle to have groceries and to make food and make sure that I was fed.

Okay, folks, let's have our minimalistic slides.

I have a class that I teach this semester called, "Disability Culture in the Arts."

For non-speaking people, they generally have very good receptive language skills.

They understand what's being said to them, about them and their environment.

I'm teaching the students that disabled people exist, that we deserve everything that everyone else gets.

Your degree of intellectual disability or not does not actually correlate with whether or not you speak.

Some people who don't speak are now earning PhDs.

Some people who speak are not able to get a high school diploma.

These things are independent, and they're also independent of whether or not you can live a good life.

>>I didn't grow up talking.

I didn't talk until almost five years old.

When I found out that I was autistic, it made so much sense to me.

I'm like, "Duh, I should have known that."

My family knew because I was diagnosed at three, but I found out when I was in my 20s.

I live in Prince George, that's about 35 minutes south of Richmond because nobody knows where that is.

I know my dog.

I knew he had to poop.

When I try to find other autistic people, other disabled people, it's usually online because physically here can't find anything and it is very lonely and isolating.

I would dream that I would be the one to make a community that was completely accessible in every way.

You're blind, fine.

Deaf?

Fine.

Mobility problems, fine.

There are people here that understand your problems, your needs.

What would that look like?

(lively fiddle music) (birds chirping) (rake scraping) (leaves crunching) (lively fiddle music continues) (door clinks) (people chattering) >>Innisfree is much like any other intentional communities.

(people chattering continues) We all are agreeing to contribute in small ways that may not be individually recognized.

>>I first came here in August 1st, 1977.

There were less buildings here then and the workstations were weavery, wood shop, bakery, and the vegetable garden, that's all the workstations you had.

>>I get to make some big things and little things.

Not everybody can participate in the wood shop far as machines go, but almost everybody can sand and oil and some people can use the hand sanders, which are quite safe.

>>Our sort of unofficial motto is together we can make it.

There's obviously a little bit of a double meaning there because we make things here.

Hey Chris, you wanna go get eggs?

>>Yes.

>>But then there's also that aspect that there is power in community and that together we can make things happen that we wouldn't be able to make happen as individuals.

>>It feels like sweater weather again.

(chickens clucking) (lively music continues) >>The residents at Innisfree who have disabilities, who live here longterm are referred to as coworkers.

>>Hey Jim can I tighten your belt a little bit?

>>Tighten your belt a big bit.

>>A big bit, okay.

>>A big bit.

>>A big bit.

Yeah, very much.

>>Most of our houses have around four coworkers and around two volunteers living together.

Rather than having staff who come in in shifts, there are volunteers who are sharing the home and the responsibilities of the home with the coworkers.

(Flora vocalizing) (Jim vocalizing) >>All right, have a good day, y'all.

(lively music ends) (door clunks) (lid clunking) >>Ruper.

(vocalizing) (birds chirping) >>The common denominator for all of the problems that autistic adults face is the problem of ableism, bias or prejudice against disabled people, negative ideas or stereotypes.

>>Virginia tech ramps don't make sense.

>>And how ableism manifests in all of our policies, in our practices, in our institutions.

>>Even the angle is pretty steep.

Luckily, I'm having good mobility days right now.

>>It is deeply interconnected with all other prejudices and forms of marginalization, and that includes the ways in which people in rural areas are treated.

>>Hands down, the hardest part for me in my day-to-day life is just not having the healthcare infrastructure that we need up here, not having enough specialists and having to travel so far for care.

>>And I can't take normal transportation like a bus because there's none where I live.

>>When we were heavily involved in Lucian's therapy, it was constant driving to Richmond or constant driving to Raleigh.

>>We were gone all day.

>>Two, three days a week.

>>For a long time.

(gentle music) >>They only just recently started some autism stuff in South Hill, but that's for little kids, and there's really nothing around here for like young adults, teenagers, stuff like that.

Once you find that group, it's a night and day difference.

>>You guys, don't forget to start shooting.

(gentle music) (arrow thuds) >>I usually shoot it right-handed, but I kind of wanna try and shoot left-handed and see how that works.

>>So you're ready for battle?

Just in case, you never know.

>>I think it'd be a fun challenge.

(arrows thudding) >>Today is our annual adult camp out for the Autism Society of Central Virginia.

We get to be here at Camp Hanover, do things like archery, swimming, hiking, fishing.

>>All right, come on in and take a seat.

We gotta get this fun started.

A lot of our programs that we offer, people come for an hour, hour and a half.

There's not a lot of time during that time to really form friendships.

(people chattering and laughing) >>That's right, stay, golden.

I'm Mark Roelen.

I'm a huge "Golden Girls" and Bluey fan and I'm not afraid to show it.

>>And who's the best?

>>Sophia was.

>>Ooh, I'm not so sure about that, buddy.

Dorthy is the best.

I love Dorthy.

She just keeps it so real.

(lively fiddle music) (people chattering) >>We ive in Halifax County.

He was my campaign manager when I was running for Homecoming Queen, so that's how long a friend we had been.

>>20 years.

>>This would be like I think my third year in the council and I really like it so much.

>>We have a self-advocate council and it's comprised of about 13 self-advocates right now.

Self-advocate adults are autistic adults who are advocating for themselves and their own guardians.

The purpose of the council is really to help guide us as an organization, make sure that the information that we're providing is coming from the autistic voice.

>>If you actually get to know all of my other self-advocates, they each have a very unique story to tell.

>>Here's one I did when the very sad thing happened at Virginia Tech and it has no words and that's not a lesson lost on me.

I just tell people all the time upfront that I'm autistic.

It's very mild, so people assume that I'm normal, and then when I do something that everyone else not to do or say, they still assume I'm normal, and now they assume that I'm just a jerk who doesn't care how other people feel.

People don't have to do a whole lot different to interact with us.

Just don't make assumptions.

Now it's your turn.

Go ahead.

>>So me.

Huh?

>>Can you introduce yourself?

Tell me your name.

>>William Ward.

When I was 19, it was 1984, I appeared on the national... >>I hope nobody fussed at you for being too loud because right now you won't break anybody's ears if you speak up.

It'll be okay, William.

>>And you have the right to speak up.

>>Yeah.

>>You have the right to speak up.

>>Yeah, now you're doing it.

We have a lot to, you've got a lot to share.

We'll miss it if you don't speak up.

>>Yeah, yeah, that's right.

And Mark is over there.

I miss them, so we all.

(birds chirping) >>If I had a really good time, like up in Richmond with like the Autism Society, this is like you come back to this and you're like, "I wanna go do that again."

I won't tell somebody that I'm autistic until I am comfortable around the person.

Happy.

Some people I've known for 10, 12 years, still haven't told them.

Doesn't have to be perfect?

>>He's had some challenges with other kids and he started masking to connect with people his age.

>>Autistic masking involves being able to control the way that you're speaking.

>>That's kind of neat.

>>The way you are facial expressions are presenting, the way you're moving your body to appear virtually indistinguishable from non-autistic people.

At the same time, it has a huge cost.

>>It's exhausting.

It is very exhausting trying to keep that mask on and trying not to let anything shine through.

>>To know that he feels like he has to do that is just, it's hard as a parent.

Sorry.

It's just really hard.

>>It'd be nice if like the ACV had something down here.

Really the only reaction I can get is their virtual social club once a month.

Sure.

My name is Lucian.

I have attended this group for a long time.

I am also an Eagle Scout and my favorite movie is "Shrek."

The intro's a classic intro.

It's iconic.

>>I had a hard time with my birthday this year 'cause I turned 36, and when I was first diagnosed, I came across a study that said that the average life expectancy for an autistic woman was 36, and the question is, is being autistic deadly?

But the answer is almost more disturbing.

We are more likely to be the victims of filicide, being killed by our parents or guardians or people that are there that are supposed to protect us.

>>Autistic and other developmentally disabled people are more likely to experience sexual violence than non-disabled people are.

>>We unfortunately have very high rates of suicide and suicidal ideation.

These things don't come from us being autistic.

It comes from us interacting with a world that wants to actively exclude us.

>>20% of autistic youth have been questioned and detained by police.

These injustices are only exacerbated for autistic people who are further at the margins.

>>My life is always in other people's hands.

My care is based off of other people's beliefs about me.

I struggle with chronic pain and I go to the doctor and I ask for help and then they treat me like I'm a drug addict, or people talk to me at the hospital like I'm a baby.

What I'm doing is I'm making my tube feeds because I don't eat a lot by mouth.

I feel like a bruja or a witch, like just mixing everything together.

People get upset when they see my cochlear.

Someone tried to take it off of me.

You think I glued this thing to my head?

No, it's a magnet, I can't hear now, but... I can't even get interpreters when I go to the hospital.

I'm deaf, but you're talking.

My mouth works, but my ears don't.

When you don't have support, everything around you makes you feel crazy.

I really am made to feel like they're just waiting for me to die.

>>When a person is labeled high-functioning, that person's actual needs become ignored.

When a person is labeled low-functioning, their humanity is ignored or denied.

>>Jim is 79 years old and he came to Innisfree 50 years ago in 1974.

>>Music Box, "Valentine Heart, Let Me Call You Sweetheart."

Was a basic game of baseball.

>>I arrived in 1976, so he'd been here a couple years, and after nearly 50 years of knowing each other, I think we grew up together.

>>Can you tell us a little bit about how it actually got started?

>>Sure.

There were a group of families that got together and- >>Hello.

>>And they realized that they could not see in the future a place for their, at that point, young children and they were getting older.

When Jim was a teenager, he went to a residential school.

When his parents visited, they were not happy with what they saw.

It was much more regimented and Jim was required to follow the schedule, for goodness sakes, of course.

(dramatic piano music) >>He speaks frequently in sort of scripted language.

It might not sound the same way as someone else, but he's a really effective communicator.

>>Macaroni and cheese, or mac and cheese?

>>We are having quinoa and black bean salad.

(Jim vocalizing) (birds chirping) >>If you were in a nursing home setting, he would probably be much more limited in his movement, and I can imagine, from what I know of Jim, that being a really frustrating thing.

(bucket contents clunking) (Jim vocalizing) (water sloshing) >>Having the space here to navigate on his own and the freedom to navigate on his own probably makes a big difference in his quality of life.

>>Come on in.

Well, hello there.

How are you?

How are you today?

>>This model, by nature of the fact that there are a large number of people with disabilities living together, it's considered to be institutional.

That limits the ways that public funding can be utilized.

We have a tuition for our coworkers, but we also rely heavily on the support of donors because we want to keep our costs accessible as much as possible to the families.

>>I have so many dreams like that, but I'm poor.

(dog food clinks) Okay, you can eat.

That's why my dreams won't come true for me.

(quiet piano music) (people chattering) >>Every year, the first Saturday in December, is the industry open house and you got some various things to sell.

All the wood, all the bakery bread, the weavery, art studio.

We even have a herb garden making some tea.

>>On the one hand, not being able to access those public funds is a real challenge.

>>How do you cut those strips?

Do you use the table saw or do you use like a miter saw?

>>Actually, it's a table saw.

>>Gotcha.

>>On the other hand, even if we were eligible to access those public funds, so much of the freedom would probably not be possible if we were a Medicaid provider or if we were taking insurance.

That whole risk management piece comes in heavy as soon as you start using those funding streams.

>>I'm picking you up tomorrow morning at 9:30, right?

>>9:30?

>>Go to church.

>>Yay.

>>And this is my friend Gail.

Hi, Gail.

How are you?

>>It's so weird that we think of autism as people that don't want community, people that can't form social relationships.

When you find other people whose brains are on a similar wavelength, who understand you, there is nothing like that feeling.

Traveling down (upbeat guitar music) >>Disability justice isn't just, let's stop ableist stereotypes.

>>We actually wanna talk about a bill that is going in front of the education committee.

>>Disability justice is also about making sure that everybody has access to all the forms of care they could possibly want.

>>We're really lucky to have them here educating us about the importance of autism.

(attendees applauding) >>Making sure that everyone has access to the support they need to thrive.

>>I really want to model for people with disabilities.

I don't see a lot of other people like me, a Black woman with tubes, that's deaf with autism.

I'm hoping one day before I'm too old that someone says, "Hey, we see your potential."

Thank you for being a friend >>Hopefully.

(upbeat guitar music) (all cheering) >>Production funding for "Life in the Heart Land" was provided by The Chrisman Family Foundation, and by... Babbling brook reminds us flowing Plow the earth and plant and need Watch your children grow Day breaks into nightfall soon Where reaping all we've sown And who belongs Is it you or is it me Is there room For us in the heart of the land (gentle music)