Lenkaland

Episode 9 Show Notes

Welcome to Episode 9 of the Disability Community podcast.  It’s rainy again here in California.  The kids are so ready for sunshine.  I am ready for sunshine.  A couple of days this week hinted at spring and we were outside soaking up the sun.  But of course this weekend we’re all stuck indoors again.  Time to get creative!

We’re getting creative at the podcast.  We’ve heard from listeners that would like to call into the show and make our community here interactive.  We’re working on making it happen.  Just to let all of you know, so far we have not earned one dime for our efforts here.  Our affiliates are commission-based, so they are opportunities, but not advertisers so-to-speak.  I am happy to be here with you every week.  These podcasts are great for my perspectives and creativity.  My husband is my technical guru so he helps figure out all of the logistical details.  We make this effort every week because we believe the disability community needs a voice.  We need our very own space.  It’s important.  We are not professional journalists.  We do not have a recording studio.  We have jobs, two kids ages 7 and 1, and a messy house (well, not that messy, but still lots of laundry needs attention today).  We are discovering this adventure one leap at a time.  We are doing this because we believe in you.  We believe in the power of reaching out and building connections to improve all of our lives.  So thank you for sharing this journey and lending your support to our cause.

I heard from Paul in Fremont this week, sending me an email about the importance of volunteering, and I agree completely.  He wrote, Volunteering is a great motivation and also a way to keep active.  Without activity I get bored which is not a good companion to disabled people in general.  I volunteer twice a week at the Fremont Senior Center’s lunch program. Two days a week of working just like everyone else makes the whole week fulfilling.

This is fresh food for the seniors with 2 paid chefs, 1 paid autistic pot scrubber who has been working there over 12 years, and about 10 volunteers who work (not at the same time) to help prepare, serve (like an assembly line), and cleanup.  Of all the volunteers I am the only one that walks with a gait, speaks with an impediment.  Have been volunteering at the SC about 4 years.    To get there I just walk through Lake Elizabeth Park.

It is a 2-bladed sword  – I am motivated by the activity, the socializing, and the meal I take home.  For a single,  50 year old disabled man (for over 30 years) I am in a wonderful dream.  Sure I feel aches and pains from all the walking I do — but it feels good being accepted and trusted to do things.

Thanks, Paul.  Balance is huge when you have a disability.  And we cannot always weigh physical health over mental health in our decision-making.  Mental health is just as important.  Thank you for sending an email my way.  I love to share stories, so if you have thoughts or experiences, advice or ideas, send them to me at lenka@mydisabilitycommunity.com.  Please note in the email if I can share it on the show and in the show notes.  I look forward to hearing from you!

As for my week, disability does not let me coast very often. I have an illusion that I will reach a plateau one day and I’ll be comfortable and fine emotionally. This will never happen, though, not completely, because it is in my nature to question and search for undiscovered answers. It’s in human nature to look beyond the known.  A place of quiet is not a realistic goal, at least not forever. I have a busy brain.

Yet, times of quiet are needed.  Again, the beauty of balance.  This week I rediscovered afternoon naps.  Ah, naps.  I had lovely days where I was active in the morning, napped, and active again in the evening.  My pain faded, my symptoms relaxed.  It was a lovely remembering of how I need that scheduled down-time (at least, my body needs it- my mind has a hard time letting go of everything that isn’t getting done, but that’s another story).  Throughout the week vacation, though, I resented the lazy afternoons a bit, because I kept thinking, okay, this is the corner, I’m back to myself after this rest. And I would wake up and the fatigue might cling, or the pain might resurface, and I would get so angry.  It shouldn’t be like this, I thought.  I should feel better by now.

And this big churning frustrated depression clouded the horizon, this feeling of hugeness, like I was suffocated by the ever-growing demands in my life. I want to be a great mother, and wife, and teacher, and artist.  I want to be here with you every week.  And keep the house tidy.  And take care of myself.  There’s nothing strange about any of that- any thousand people could write the same thing.  And we all wonder, how can we do it all?  And for me, how I can do it with less effort, in fewer hours?

I don’t know.  But what I do know is that the doing doesn’t matter as much is how I feel while getting it all done.  If I get it all done and I’m a grumpy mess, that isn’t serving anyone well.  If I can get it done with compassion and care, well we all win.

I used to move from should right into anger, betrayal.  How could my body do this to me?  How could it let me down in such a major way? I would feel like punishing myself, really, maybe more activity to prove that I had more control than my body.  I was the boss.

Then I got to thinking.  I have an error in my genetic coding.  A computer with a typo in programming crashes and burns.  And yet, my body manages a great many things.  My body works so hard to keep up with me.  It is trying its very best to be healthy with this crucial mistake.  My body doesn’t want to fail me, it’s my perception that makes it feel like a failure.  In actually, my body so strong and resilient and miraculous.  Mistakes and all.

If I treat myself with kindness, with care, with a dialogue that asks what I can do to help myself feel better . . . what a gift.  So if I spend a few hours chilling, then I have the energy to do a thing or two.  If I eat well, if I keep myself creatively engaged, if I live well, then I can help myself.  The punishment, the battle, becomes self-care.  And that’s a lovely way to get through a day.

So I need to try and build that down-time into my schedule.  It’s as important as food and laundry.  Seriously.

That’s part of my journey towards acceptance.  I don’t think acceptance is a destaination.  I think acceptance is part of the cycle of emotions that we go though again and again.  Accepting one day can be furious bargaining the next.  And that’s okay.  There is no correct way to manage challenges.  There may be a better way.  I’m constantly striving to find that better way and I’ll let you know what I discover.  Meanwhile, it’s easier to think about what hasn’t worked along my journey.  A strategy that I am now trying to change is consoling myself by what isn’t my fate yet.  In the past, I would feel better by thinking at least . . .  and then finish the sentence a hundred different ways.  Because within the disability community, there are degrees of disability. For myself, growing up, I thought, at least I don’t have braces, at least I’m not in a wheelchair. I might struggle, but the struggle is better because that is closer to normal, or looking normal.  These tools, because they are tools, took on this huge symbolic energy.  We don’t feel bad about using a calculator because our brains can’t add big numbers.  So why do our society feel so discouraged by using accessibility tools?  I’ve been prescribed lower-leg braces at least three times.  One time I went to the consult and never returned.  Another time I carried the prescription around town for a year before deciding it had probably expired.  Each time it felt like a defeat, to admit things were that bad.

Wheelchairs, especially, have huge symbolic energy.  A lot of movies have used the wheelchair as a symbolic obstacle for a character, and by defeating the chair, by mentally overcoming their physical limitations, the character is free again.  In many stories, the hero is often held back by their own mistaken belief that they belong in the chair.  And if they change their midset, and believe they could walk . . . lo and behond, they’re walking!  This happens in a story I love despite that theme, The Secret Garden.  There is an odd belief in our society that the mind is more powerful than the body, and if we only believe enough, and work hard enough, we can be the miracle that the doctors never saw coming.

And it happens, once in awhile.  But it also isn’t fair to frame our challenges as a mental choice, that we are somehow choosing the disability-lifestyle because we are not mentally tough enough to change reality.  I can write an entire show about this idea, too, the role that mental toughness plays in the disability experiences. But back to the actual tools, the braces and wheelchairs and assistance devices.

It’s sad, really, that these tools have such negativity around them.  Because they are tools.  And they can make life so much better for people.  This week I broke through my own inner-wall and went to be fitted for lower leg braces (ankle-foot-orthotics, or AFOs).  He casted my feet to mold custom supports that will hopefully give lift so the muscles don’t have to work so hard, and structure under the arch so that joint (which isn’t supposed to be a joint) doesn’t flex as much.  It could help with the pain.  I have custom insoles for that, but they don’t affect the pain much.  So we’ll see.  They should be ready for me this week.  I’ll keep you in the loop how they work out.  I do have high hopes that it will make a difference for my big-activity days.  And my attitude has definitely changed from, I don’t need this and I’ll prove that I don’t need it even if it causes a lot of pain and exhaustion to whatever helps!  I’ll take it!

Pretty liberating.

I took my daughter to a movie this week, the number one movie, How to Train Your Dragon. And, guess what?  Characters with disabilities!  Not framed as a disability story, but, still, quite a few characters with prosthetic limbs (mostly because of dangerous dragon/people fights).  Interesting how it becomes, in the movie, a badge of honor in some ways to get maimed.  One character enters the fighting ring with the statement, Yeah, it’s only fun if you get a scar out of it. So again, when does a disability become cool?  I won’t give anything away, but I came home with some strong impressions about certain characters.  And it was only talking to my husband that I realized that the main dragon has a disability, too.  That won’t give anything away because it’s in the posters.  He’s missing part of his tail.  And this is where disability stories get interesting for me.

I’m a literature major so I’ve studied and wrote lots of papers of stories and meaning and intent and theme and all of that good stuff.  One of my most interesting classes talked about the traditional western narrative, the Master Narrative, so to speak.  In this narrative, the hero is usually put in a position where he or she must rely on themselves, their strength, to defeat the enemy.  Usually, the mentors and the helpers are killed or detained so that the hero meets his or her nemesis alone.  The power of the individual.  Which is a huge ideal in our society, the ability to overcome obstacles heroically, being self-reliant.  If you watch for this in movies and books, you can have fun with the many ways a hero’s support network is gradually taken away from him or her.  It’s part of our collective belief in the power of the individual.

There are alternative narratives, of course.  Not every story follows the same path.  The idea that opened my eyes was a class in the power of the female narrative.  This class was aimed at Gothic literature in particular, and how these stories became seen as pulp fiction for flighty women.  Why?  What made them less meaningful than the traditional hero tales we enjoy?  The themes in those Gothic books continue into modern movies and books..  These stories, this alternative narrative, is, essentially, the Disney story.  The Happily Ever After.  The romance.  I know in my growing up, and now among my friends, Disney stories are often seen as childish and hopelessly romantic.  After all, why should a princess need a prince to be happy? These stories focus on a relationship.  And only an affirmation of that relationship can solve the obstacles in that world.

Once I heard this perspective, my world forever changed.  Why not focus on cooperation, on family-bonds, on seeking wholeness in other people?

This is where disability becomes powerful and tricky for me.  My first job was cleaning rooms in a historic hotel.  One day, I had an enormous take out tray to return to the kitchen.  I struggled, but managed to get halfway down the stairs before my balance wobbled and I sat on the steps.  I didn’t drop the tray, thankfully, I held it on my lap, but it still clattered with the almost-disaster.  The owner of the hotel rushed to see what had happened.  “You know what you should do next time?” he said.

“Ask for help?” I answered.

“Take two trips.”

He wasn’t the nicest boss.  But it is a pervasive message in our society, to carry our burdens alone because there is more strength in the hero’s journey than in “giving up” and asking for help.  I appreciated the dragon movie because the disability brought an opportunity for teamwork and cooperation that changed the world.  Disability may force us to depend on other people.  And that can be tough, but it can also be an opportunity to build community.  That is why I come here every week.  To reach out and say we can have more than the struggle.  We can be outside-thinkers, creative problem-solvers, masters of adaptation, compassion, and resilience.  We might be exactly what the world needs right now.  A little togetherness.  A little community-support.  In that way I am not sad at all about my fate, my challenges.  Because they have brought me here to you.  And I am meeting the most incredible people by doing this podcast.  Thank you.

That said, something my daughter and I enjoyed together this week was watching Life episodes on the Discovery Channel.  I know we need our own set of the series.  The images and the stories about the creatures that inhabit our world make me think and wonder and appreciate my time here on Earth.  It’s incredible stuff.  You can search your local listings- I think there is only one or two left in the series, though they are also repeating past episodes.  However, if you want the whole beautiful thing and get %15 off, click here.  We share an amazing world.

And that was a quote I saw this week, I don’t remember exactly, but it went like if it is the best of times, or the worst of times, it’s the only time we get.

Let’s enjoy the ride.

I took the kids to the Sacramento Zoo and Fairytale Town this week in Northern California.  A few pointers if you want to head out that way.  The zoo itself has no parking lot, so we have to park across the street by Fairytale Town and they had seven, yes, seven Accessible Parking spots for the entire zoo and Fairytale Town.  The nice lady at the gate said that the zoo did own the curb in front of the zoo so you could pull over there to load or unload.  That didn’t help me much since I was alone with two kids.  Both parks have special pricing for guests with disabilities, which was nice because I could only handle a couple of hours before I was done.  I did get a pretty good glare at Fairytale Town though as I asked her about accessibility.  She thought I was cheating the system, I could tell.  But I was so desperate to sit down by then, my feet hurt so bad, I didn’t care what she thought.

I appreciated that both parks were fairly flat with no stairs (great with a stroller).  They were also fairly small, which I appreciated.  The zoo had a fun animal show that we sat and watched for half of and hour.  Lots of benches.  Hurrah.

However, both parks had pretty tricky playgrounds.  I had a vision of the kids playing while I sat nearby and got a rest.  In the zoo, however, there was this big cement climbing snake/slide thing without handrails that Ian could have seriously conked his head on if he stumbled, and Fairytale Town was full of old-school metal slides that freaked me out.  There wasn’t a real area for the littles to explore that had containment so the parents could chill for a couple of minutes.  This only matters if you have young kids, though.

Overall, we had a great day.  We had a moment where Ian went up to the chimps, who are behind clear plexiglass, and this chimp swung right up to Ian, sat down, and pressed his (or her) hand up to the glass right up against Ian’s hand.  It was pretty amazing.  I didn’t get a picture of the hands together, but I have the chimp’s hand which I’ll post with the show notes.  It was that bridge, that connection again, that we are all together in this journey even as different animals on this planet.  We’re not so alone after all.  Pretty cool stuff.

I encourage a visit if you’re interested.  Ask at the gate for the discount if you feel brave (I’m sure they just give it to you with a visible challenge).  Catch a ride on the very cool carousel that has some stationary animals as well as benches.  Anika even got to ride on her current favorite animal, the spotted hyena.  Enjoy the adventure.

I’ll talk to you again next week.  Send me an email at lenka@mydisabilitycommunity.com if you want to throw ideas (or encouragement my way.  Check out the website for a picture of Ian’s chimpanzee friend.  And take good care of yourself this week.  We are so strong and brave and resilient.  We are going to change the world.  Thanks for listening!

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