Friday, February 27, 2015

My Thoughts on Disabled Girls Talk Episode 1: Generation ADA

I listened to another Disabled Girls Talk podcast today.  This one focused on generation ADA.  Now, I don't know if I'd be considered generation ADA since I was going into fourth grade when it passed.  I also don't know if I'll really be able to pinpoint how the ADA has impacted my life.  I have a hard time perceiving a time when things were more closed off to me when the reality is, my fourth grade year (1990-1991; the first one post ADA) was among the worst for me, in terms of experiencing ableism.  I think I always grew up with an IEP.  My twin sister and I were the first disabled students that our nursery school teacher ever taught in a mainstream class in 1983.  There was no definitive before and after feeling for me.  In fact, I didn't even know about the ADA until college because I briefly pursued a SPED major.

I probably did take what accommodations were readily available to me for granted.  I rarely had to advocate for my own accommodations because they were in my IEP, and I sort of resented them, to be honest, because they set me apart from my peers.  The only time I can remember having to advocate for my own accommodations was when I worked as a counselor at a summer camp starting in 2003.  I got accepted based on my application (and when I got there, the staff learned I was disabled.)  I didn't need much, but soon realized I could not take a shower there because there were no bars, there was no chair (and the shower chair I used at home at the time had no back, because our shower was small and I could lean against the wall.)  This shower was bigger, and the floor was slippery throughout with however many girls using the shower.

I asked if there could be bars could be installed, and they were, but they weren't in the position (on the wall or at the angle) I needed them.  I worked three more summers there (5 weeks here, 10 weeks there, and a final 2 weeks the last summer) washing my hair, and myself up at the sink during one of my two hour-long breaks throughout the day.  I loved the job, but I also loved being able to go home and actually shower.

It would be impossible to account for every single microaggression and example of ableism I have experienced, but let me give a recent example.  Last month, I went to the bank to deal with some super sketchy looking stuff happening with my bank account.  My youngest brother (maybe you remember him from my guest post on What Do You Do Dear?)  not only drove me to the bank, but came in with me because he "just wanted to see how they handled this."  I got a very competent teller, who set straight to work, figuring out what was going on with my account.  Before we left, though, the teller had to call his boss over to address something or another.  Instead of looking at me, this man looked at my 18-year-old brother, and talked to him the whole time.  Even though I was sitting right there looking at him, and it was my bank account, and I was answering all his questions while my brother listened politely, but never commented.  Ironically, when I went back there a week or so later to tie up some loose ends with this instance, this time in the company of my uncle, he demanded to know why there was not a ramp at the front of the building.  In truth, I hadn't noticed the first time, as I had walked in with my crutches, but took my wheelchair the second time.)  The bank employees were very apologetic and agreed that it didn't make sense to have a ramp around the other side of the building.  (I also have been told "you don't have to stand up," both in high school, and while working at that summer camp.)

I think, if I can point to anything as an indicator to pre and post ADA access and attitudes in my life it would be a recent conversation I had with an older family member.  I told them that surfer Bethany Hamilton had announced her pregnancy.  We had a good discussion about adapting and then they said they were reminded of a recent outing they'd had with a friend at a local restaurant.  There, they saw a gentleman come in with two prostheses on his arms.  My relative was stunned and intrigued when they were told by their friend that this gentleman had removed his shoes and was eating French fries with his feet.  They said their friend, who is even elder than they are, encouraged them to turn their chair around and "watch this."  My family member declined, as they didn't feel comfortable doing that, but admitted that they did "wish they had watched" because it was something they had never seen.

I told them I was glad they had not watched because that gentleman, no doubt, knew he would be stared at and probably just wanted to eat his meal and not be gawked at.  I told them this is the fine line we, as disabled people walk.  We have the access to go to many places, but we know we will still attract stares and questions when we go out, so we (at least I) don't go out much.  I said, chances are, that if more of us could go out, or chose to go out, the reaction to us may become less and less.  When my relative was growing up, I'm sure any disabled people in their vicinity were institutionalized and therefore, never seen.  Also with the passing of the ADA many buildings (not all) are accessible, so we are able to get places we weren't able to go before.  But I know for me, the reaction from the public is not something I want to deal with, so I stay home, where it is accessible, and everyone is disabled, so no one stares.  I said, "The world isn't made for us," and my relative told me definitely, "Well, I think it is."  They only came around when they could approximate a personal experience (that had nothing to do with being disabled.)  Then they agreed, the world might not be made for us.

As this podcast was made last year on the 24th anniversary of the passing of the ADA, time has passed, and we are now five months away from its 25th anniversary.  In case I've seemed otherwise in this post, I am very grateful for all the things made possible by the ADA.  The ability to get accommodations I needed in school, going to summer camp for disabled kids as a teenager, and living in accessible housing now.  I appreciate each and every time I go someplace new (like the State Theatre) and find out they are fully accessible to me.  I went to a new local restaurant on Valentine's Day with my sister and my aunt.  My uncle had made the reservations and asked if it was accessible.  They had wheelchair entrance around the back and an accessible bathroom that was very nice.  But the best part of that experience for me was when I rolled up to the table and saw they had already removed the chair on the nearest side of the table, and there was a place setting there.  It made the whole experience so much more welcoming for me, and it definitely made me want to go back (sometime when it's not as brutally cold, though.)

Also a plus?  They had great dessert!

Perhaps, in the next 25 years, we will see an evolution in the access (so we won't need to call ahead to every single new place to ask about their restrooms, elevators and doorway widths) but even more, I hope we see people's attitudes about disabled people evolve, so that we are not so novel we are stared at when all we want to do is eat a hamburger.

Exercise-Palooza: Week 3

You guys, week 3 of exercising was going so well and then I felt some pain coinciding with when I moved my left arm.  So I'm focusing on leg exercises today and taking the weekend off and hopefully (fingers crossed) I can get back to working out on Monday.

It is a little bit more intimidating for me to have anything hurt around my arms because I use my arms to get around.  Whether it's pushing my chair or walking with crutches.  So I'm taking this very seriously, because no one wants a more severe injury than a little bit of muscle strain.

Other than that it was a pretty successful week.  Almost four whole days on my new exercise program.  I definitely could feel it, especially the arms series.  But like I said earlier this week, even though that darn arm series is brutal, my arms are my favorite part of my body, so I am willing to push through.  (Ironically, it was the core series with arm pulses where I felt the muscle pain.)

More updates to follow next week.  Hopefully all will be well, and I'll be back to working out arms, core and balance, as well as my legs.

Thursday, February 26, 2015

Guest Post on What Do You Do Dear?

Check it out here:   Cautions and Kudos for Able Parents Raising Disabled Kids.

I loved being able to sound off on something that is so close to my heart.  There is such a rift between able parents raising disabled kids and disabled adults, and I wanted this post to be able to begin to bridge that gap.  So often, in the past, when I have seen something that is damaging or harmful being reposted by lots of able parents (in reference to disabled kids) they don't recognize the harm, and don't seem to want to.

So, it was amazing when I first connected with Mary Evelyn last month after reading this amazing post by her My Son's Disability Defines Him (And Why I'm Okay With That).  It's so positive (and so rare) to see an able parent actively embracing their disabled child's status as a disabled child.  It's awesome, and I hope many more able parents follow her example.  It was amazing to connect with her, and get to know someone who was open to learning, and open to hearing from a disabled person.

And when she asked me to guest post on her blog, on top of that? I was floored.  In the best way.

So check out my post and check out her blog...and know there's a bridge being built.

Wednesday, February 25, 2015

My Thoughts on Disabled Girls Talk Episode 3: Friendships

I just listed to a podcast about friendships and how disability impacts them.  I felt like it was a good jumping-off point for a blog post because I found myself really relating to the things that were said.

My disability (Cerebral Palsy) has definitely impacted my friendships.  When I was younger, I had a couple "best friends" through the years and different elementary schools, and we'd play at each other's houses, but it wasn't super common.

Once I got to middle school, my sister and I started making our own friends, and it was one of the first times that I had to come to terms with her being invited to a birthday party while I was not.  (If I remember right, the friend asked my sister if they should invite me so I wouldn't feel left out, but my sister said no, as I wasn't actually friends with this person.  All these years later, it definitely feels like the right call.)  Also, in middle school, I got grouped with the only other mainstreamed disabled girl in my grade which was ostracizing and irritating, even if we did become friends due to proximity.  Between middle and high school I went to camp for disabled kids and made my first real disabled friends (one of whom I am still in touch with.)

In high school, I definitely had friends, but we didn't do things together.  When I did go to one friend's house and climbed her stairs to the main level of her house...her mother clapped for me and said "yay!"  How totally embarrassing.  This was also the time when I'd start hearing from well-meaning friends, "I was going to call you because a bunch of us were hanging out, but since we were jumping on the trampoline, I didn't want you to feel left out."  Except being told about how someone was planning to include me and then decided not to pretty much guarantees that I will feel left out.

After high school, I found a nice group of friends through a church I was attending.  While they were good about including me and not doing things I couldn't do, they also encouraged me to go forward when there was any kind of prayer for physical healing, which was off putting.  I made another friend who was super accommodating but was mortified on my behalf when they told me in detail about the hiking trip they went on, because they thought they were being rude or insensitive.  (Tell me about your day!  Really!  It doesn't offend you that I roll, and it doesn't offend me that you walk, and do walking things, I promise!)  I also feel like it really is true what the ladies in the podcast said about it being harder for friends who are impulse-driven.  One of my friends from college days through my late twenties had a really tough time doing "the same thing" all the time.

I do feel very awkward asking anyone to change their plans on my behalf.  I'd sooner bow out myself then ruin the fun for the rest of the people who want to go somewhere.  And I've noticed, too, that I have become extremely apologetic and also probably overly grateful.  Because when people do consider me, I feel like it's so uncommon that I notice it and I have to thank them.

I have one able-bodied friend in particular, with whom I used to talk a lot about disability stuff.  They had an interest in it and worked in the field.  When we first became friends, I would often make self-depricating remarks, or quote other people who had said offensive things to me and make a joke out of it (as a way to take my power back, maybe.)  Over the last couple years, though, as I have become more educated on disability culture and confronting my own internalized ableism, it's become harder to hear them make the sarcastic remarks we used to make together.  I have yet to figure out how to bring it up with them, or if it's even worth it to do so, as we see each other so infrequently now.

When to disclose disability is an interesting question because for most of my life, people automatically knew I was disabled, the moment they saw me.  The wheelchair, the crutches, the braces (when I was younger.)  It was never up to me to disclose because people always just knew, and assumed things about me (positive and negative) based on that.  But with the internet now such an integral part of every day life (and with some friendships being formed primarily there) the question of disclosure definitely takes on new significance.

I remember one friend, in particular, who I started getting to know around five years ago.  They were the first person I remember making a conscious choice not to disclose my disability to right away.  Three months later, when I shared a piece of writing where I mentioned it, they responded simply, "You never told me about the Cerebral P."  That was it.  Now, they are the one helping me out with exercise-palooza and just at ease commenting about "We never talked about if you were able to do this type of movement?  Are you able to?" which I so appreciate.  Friends who are able to take my CP in stride mean the world to me.

Both disabled and able-bodied friends mean the world to me.  The deciding factor for me is, like the ladies said, if they are able to be open and at ease about my disability and don't tiptoe around it, or ask me if I want to be healed.  I don't have many disabled friends (and almost none with CP) but I am always open to meeting more, and getting to know people.

All that said, it was definitely a great podcast!  Worth a listen for sure!

Friday, February 20, 2015

Exercise Palooza - Round 2

It's been almost two weeks since I've started exercising, and I just got done with another Skype workout with the friend who's been helping me with workout stuff.  She came up with a few series' of exercises (upper body, core and balance).

Did a little teaser course of the new exercises and I can do them all!  The core stuff is the hardest (except for this weird and wonderful exercise that I've never heard of that is super fun.)  Taking the weekend off and will start Monday with the new exercises.

Happiest exercise accomplishment this week?  Wednesday, when I finally figured out how to master my oblique exercises and could do five on each side!

Stay tuned for more exercise updates!

Wednesday, February 18, 2015

Eat Ice Cream for Breakfast Day!

Today is International Eat Ice Cream for Breakfast Day.

Do your part and eat ice cream for breakfast in honor of a special child in your life, who has fought cancer and is resting, to support those still fighting and to party on with the survivors of childhood cancer.  Post a photo of yourself eating ice cream with the hashtags #kidsgetcancertoo or #icecreamforbreakfast.  Share photos of the children you're eating for at Eat Ice Cream for Breakfast.

I did my part:

...won't you join me?

Friday, February 13, 2015

Exercise Palooza Round 1

So, the first round of exercise palooza is officially done and it wasn't bad!  I can feel that I worked out (thought I was just going to be doing one or two reps of things but my friend was suggesting different things to try and I tried them and wow were they a work out!

It was super positive and encouraging and with a bit of adapting (I'm sure) I'll end up with something that works for me.  I've done my few exercises 5 times in the last week, including today.  This is the only time I've been able to really feel that I've worked out.  My favorite part was actually her being able to correct me in some aspects, where I wasn't engaging the right muscles.

Friend said she'd work on it this weekend and see if she can't come back with something cohesive that I can do.  (Upping it incrementally over time.)

Aside from that, it was really great to be able to see my friend, whom we don't get to touch base with often.

Now, the trick will be seeing if I can remember everything she suggested, haha!  Such a full half-hour!

Exercising with CP

It was a couple of weeks ago when I finally admitted it to myself: I am out of shape.  I'm cringing even as I type that, because "bigger" is never anything I've had to worry about being.  Long story short, I decided exercise (more than making sure I'm up and walking a few times during the day) was something that needed to happen.

With CP (at least with mine) exercise has become tricky.  I can exercise daily for as long as a month and feel great, and then I get hit with major pain that means I have to do even less than I was doing pre-workout.  Pain wasn't always an issue for me, but as I've grown older, it's become one.  Cold weather has more of an effect on my spasticity.  And being overworked makes my muscles super sad.  Unfortunately, it doesn't take much these days before they've decided they've had enough.

Despite all of this, I've still been convinced I need to be more active, so I started doing a few push ups and sit ups along with a couple other things in the mornings.  Quickly, I realized that exercising every single day would likely wear me down even quicker, so I shifted to every other morning.  I adapted the push ups when on the second day my left arm and shoulder (only limb that feels totally unaffected by CP) started hurting on the second day.

And here comes the fun part... Are you ready?

Today, I'm Skyping with a friend who offered to help tailor an exercise routine to suit me.  I'm so excited, but I'm nervous, too.  Honestly, to date, anything relating to my body and movement has been negative.  It reminds me of countless surgeries, post surgery rehab, and mandatory PT during school in third grade when I got exercises I was told to do every day over the summer.

Don't knock the hair, or the giant shirt and short shorts, it was the fashion then...

Honestly, I can't even dream of getting into that position now...  My point is, I'm hopeful, but I have to tell myself this is different.  This is not someone else taking control of my body or telling me how to move.  This is a friend who is willing to help.  A friend who wants to see how I move and hear how I feel when I move so she can help me come up with something that works for me.  And it should feel like, "of course!" you know?  Of course someone wants to help you by doing what works for you and by listening to you.  But it feels a revelation.
It's so much a mental game for me.  Something I need to overcome, and fast, as exercise-palooza (as I affectionately refer to it) is definitely happening, in a little more than an hour.  

On the agenda?

- How do I work on my core, without telling my core I am?  (My core, and most of my muscles in my lower half all like to join the party, if I try to isolate any of them.  Move my right leg?  Left one wants to move, too.  Tighten my abs?  Everything follows suit.)

- Is it possible for me to do some of my own stretching in a way that does not feel totally agonizing?

Part of the reason I'm posting this is for accountability's sake.  I want to be healthy, and it want this to be a full on change not just a trend that falls away for good (or not so good) reasons.

I'll let you know how it goes...

Friday, February 6, 2015

Why the Recent Headlines About the Father Keeping His Son with Down Syndrome Are Hard to Read

Maybe you've seen the article lauding a father for keeping his child with Down Syndrome, despite his wife threatening divorce if he did.  I want to be clear: I don't fault the father.  He's doing what parents should do.  And I understand he needs money for the long trip home.  As I said, I don't fault him.

I take issue with the media's coverage of things like this and people's reactions to it.  This father is being viewed as heroic by some, which does absolutely no good for the disabled community.  This reaction feeds the idea that disabled kids are difficult to care for and that it takes an exceptional parent to care for us.  The truth is, though, we don't need amazing parents.  We just need parents, or a parent, or a person who loves us and is willing to care for us and fight for us, in the same way nondisabed children are.

This father is doing a human thing, not an amazing one.  Because that baby is a human being who needs a family, and if he were not disabled, this would not be news.  If a mother abandoned her nondisabled baby and threatened to divorce her husband if he kept him, it would not be news...because of course a parent would keep their child.

Armenia clearly has some archaic beliefs about disabled kids.  Let's focus on that, and how harmful that is, instead of just reporting that "it's the norm for 98% of babies with Down Syndrome in this certain country are abandoned to orphanages where they get extremely low quality of care, if any at all."

I am absolutely glad this father did what he did.  It's what I hope anyone would have done.  I just wish it wasn't framed in such an exceptional manner.

Sunday, February 1, 2015

Accessibility Review of State Theatre (and Why the Shaping Sound Tour Was Amazing)

Photo credit: Angelica Agents

Last night, I got to see the Shaping Sound tour at State Theatre in Minneapolis.  I've never gone to a concert, but have gone to a dance show previously (the So You Think You Can Dance season 3 tour), where I sat in accessible seating, way at the top in the very back row of a very big venue.  It was possible to see, but we were so far away.  All of our photos from this tour required a lot of zooming, and even then, remained distant.

Sabra Johnson and Dominic Sandoval perform Make It Work on the So You Think You Can Dance 2007 tour

So, even though the State Theatre had accessible seating, I was glad my sis got us seats on the main floor, only eight rows away from the stage.  I also made sure to call ahead of time to check on parking, elevators, and if there was a safe location for my wheelchair after I transferred to a seat.  I was told the theatre had parking under the venue, and an elevator to take to the main doors.  Also, my wheelchair would be secure, all I needed to do was speak to an usher on the way in.

Prior to the show, I decided to use the restroom, because we were fairly early.  I was prepared for a line, and crowds, but was pleasantly surprised to see an actually accessible bathroom, just across the way from the door leading out of the theatre.  There were ushers beside it, and opened the door.  The doorway was wide enough for me to fit through, and the door closed and locked easily behind me.  There was plenty of room to maneuver, and grab bars, too.  The usher was right there again, opening the door for me afterward.

My favorite parts of the performance were definitely this moment from early on, captured brilliantly by a friend, seated a few rows ahead of us:

Jaimie Goodwin performs in Shaping Sound (Photo credit: Angelica Agents)

It was a lot to absorb, but portions do stand out in my mind: entire sections dedicated to swing music, which were so much fun, and where Daniel Gaymon absolutely shone.  I pointed him out to my cousin during this section "See the dancer in the front?" and my cousin just nodded and said, "I know."

Swing music section (Photo credit: Angelica Agents)
The second half was full of drama and so much emotion.  The first number after intermission was an entire dance to Queen's Bohemian Rhapsody, which was amazingly executed.  I loved the push and pull as Jaimie's character and Teddy's character were constantly pulled apart by other dancers.  

Photo credit: Angelica Agents

Definitely a job well-done by everyone!

Jaimie Goodwin's curtain call (Photo credit: Angelica Agents)

Shaping Sound's founders take their bow (Photo credit: Angelica Agents)

Loved being able to connect with several of the dancers afterward.  All were so genuine, sweet and polite, introducing themselves and thanking us for coming.  Definitely, if you have the chance to go (especially if you're a dance fan) you should.  Call ahead to your venue and see about accessibility.

Jaimie, my sis and me, after the show.  (Photo credit: Jacob Hillman)

For more on Shaping Sound:

Shaping Sound website (for tour dates, merchandise and more)
Shaping Sound on Twitter or Shaping Sound Dance Co. on Facebook (for updates and exclusive behind the scenes photos.  See them arrive at their tour stops and post pictures of the venues and audiences.)

Overview of the show:

If you think the Shaping Sound company looks familiar, they were cast in Carrie Underwood's music video, Something In The Water, which was released late last year: