Tag: advocacy

4 Lessons Peacocks Can Teach Us About Advocacy

Posted on by Emily Ladau

All it takes is one look around my bedroom to figure out that I have a bit of an obsession with peacocks. My love affair with these mesmerizing creatures began back in the summer of 2008. I must admit I was nowhere near an actual peacock at the time. As it happens, I was at a leadership program filling out a quiz about which animal matches my leadership style. My result was – you guessed it – a peacock!

I know, I know. Deciding I needed to own peacock-themed everything all because of one random leadership quiz might be overkill. Can you blame me, though? They are undoubtedly one of the most beautiful animals on the planet.

Lately, I’ve been thinking back to the root of my passion for peacocks. It might have started with a silly quiz that I barely even remember, but there are definitely some useful lessons in leadership and advocacy that peacocks can teach us.

Make Your Presence Known

Peacocks accomplish this is more ways than one. Of course, you can’t miss their feathers. But have you ever heard peacocks making noise? They have a loud, distinctive sound, which is exactly what the disability community needs to enact real social change. No, I’m not suggesting that advocates should squawk like peacocks to be heard. That being said, disability activists are silenced far too often when advocating for our rights. An effective advocate can channel their inner peacock by letting people know they are unmistakably present.

Show Your True Colors

I’m a firm believer in not judging people by their outward appearance, and I’m aware that using physical characteristics of peacocks as analogies for advocacy could be perceived as superficial. However, when I talk about true colors, I don’t just mean on the outside. Something I’m working on this year is self-acceptance, and part of that is being myself no matter what. It’s hard to do this all the time, but I think the best advocates are the ones who don’t shy away from letting people know exactly who they are – inside and out.

Be Bold

One of the reasons I love peacocks so much is that nothing about them is subtle. They command attention, and I’m pretty sure it’s safe to say they know it. Being able to captivate someone is most definitely an art form and peacocks are lucky it comes naturally to them. I, on the other hand, have had to figure out the best techniques for keeping someone engaged in a room full of people. Granted, sitting in a big old wheelchair is kind of like having peacock feathers because it makes me pretty noticeable. But, when it comes to advocacy, there are so many amazing power players, and lots of them are making a difference for the disability community because they’re not afraid to be bold. They stand out among their surroundings…and even among other peacocks.

Go For It

I didn’t actually learn this one from a peacock, but because of one. In 2011, while on a trip to Israel, my cousin Heather and I spotted a peacock roaming around a kibbutz (a communal settlement). I had seen peacocks in exhibits before, but never just existing in nature like they should be. Obviously, I was ridiculously excited, so my cousin and I took off after the peacock in an attempt to get a picture. We should have let the poor animal be, because we didn’t get to it in time for a clear photo. Heather tried her best to get close enough, but everything we got was blurry. There was a silver lining, though, because while we didn’t get a good picture, Heather ran into a resident of the kibbutz who ended up teaching us how to say “peacock” in Hebrew. (Tah-vas, in case you were wondering.) There’s absolutely a lesson to be found in this experience. When you want to accomplish something, go for it! Even if you don’t exactly meet your goal, you’ll still get something beneficial to take away from the experience.

And who knows? What you learn just might help bring out your inner peacock advocate.

My Wheelchair is Not My Halloween Costume

Posted on by Emily Ladau

A note: This piece is written from the perspective of 12-year-old Emily, who was still quite conscious that a wheelchair itself is not a costume, and it’s not something to be questioned or mistrusted. My disability is simply another part of me – a real part of me. My goal with this is to point out unnecessary ableism in a way that hopefully brings some levity and humor to the situations I experienced. Happy Halloween, everyone!

The year my dad hit the curb with my wheelchair and I landed in a heap of crushed fairy wings should have been my first clue that Halloween was not my holiday. But when you’re eleven years old, no candy gets left behind. You just have to pull yourself up by the fairy wing straps and persevere.

I assumed the next year would be business as usual and when October came, I waited by the phone for my friends to invite me out to the trick-or-treating big leagues in the wealthy neighborhood on the other side of town. I could practically taste the full size candy bars I’d be getting in my plastic pumpkin basket…but the taste went from Hershey’s sweet to Warheads sour when I got out there and saw myself surrounded on all sides by massive grand staircases leading up to spooky decorated mansions. No Halloween princess I knew could clap her hands and have servants carry her up the stairs.

So my friends brought the candy to me. And yeah, it was almost as good as having servants…at least until my friends were accused of trying to score extra candy by lying about their friend in the wheelchair who couldn’t climb the steps. Uh, hello?  I’m right here. Silly Halloween candy police. Are you implying that little girls who use wheelchairs can’t have friends?  Well, guess what, candy police?  I’m here to tell you that people with disabilities do more than just live inside the imaginations of candy-hoarding twelve-year-olds.

But being a real live twelve-year-old girl in a wheelchair was hard sometimes, you know?  At least that’s what I was told, since the man at the next house over felt so bad for “that poor girl in the wheelchair, so please take some extra candy for her and God be with her.” Well, that was awkward, I thought, but thanks for the candy, I guess. I mean, if people are so convinced that my life is so hard, I must have deserved an extra Snickers, right? So I should just stay quiet and take the supposed perks of disability wherever I could find them, right? And for that matter, mister “God be with me,” shouldn’t I just be grateful that my parents let me out of the house like all the “normal” kids?

Well, I was grateful. But not because I got to taste the candy of “normal” life. I was grateful because I managed to finish enough homework for my parents to take me trick-or-treating. Pretty “normal” twelve-year-old life, don’t you think? I had earned my right to go about filling that silly plastic pumpkin basket, happy to be out like every other kid on Halloween.

And then we came to a house with no steps! Jackpot! I rolled up feeling super confident in my princess costume, crown on my head, and just as I held out my pumpkin I heard:  “Oh, I get it! You’re in a wheelchair! You’re right out of the hospital! Cool costume!”

REALLY, mister?, I thought. Did you not get that I’m a princess? I mean, I know I’m in a winter coat, but there’s a bright pink crown on my head! I can pretend to be a princess, but I sure as hell wouldn’t dress up as a girl in a wheelchair. Don’t get me wrong; it’d be nice to attach my crown to my head and my wheelchair to my butt once a year. It’d be nice to take it all off at midnight on October 31st and put it on the shelf ‘til next Halloween. But my wheelchair is not a costume. I can’t put it on and take it off like fairy wings or a princess crown. And that’s fine with me.

So accept me as I am. Accept me as a fairy or a princess. And please, don’t patronize me. Just share your candy.

Guest Post by Ellen Ladau: Mother and Daughter – Same Disability, Different Experiences

Posted on by Emily Ladau

When contemplating who to invite to write the first guest post for Words I Wheel By, I didn’t have to search any further than inside the walls of my house. I knew right away that asking my mom, Ellen, to write a post would provide a valuable new voice to my blog. If you’ve read some of my previous posts, you’ll know that my mom and I both have the same disability – Larsen syndrome. Because of this, and for so many other reasons, she is the person who understands me best. Being a disabled parent of a disabled child, my mom has unique perspectives that I’ve always found to be a guiding light as I navigate through my daily life. She taught me the importance of self-advocacy and she has been my editor- and conversationalist-in-chief for all things related to disabilities and my blog. Together, we try to educate people about our disability, equality, and acceptance. And while I didn’t want to edit her words, my mom is far too modest about the role she and my dad play in my life. They are the most amazing parents I could ever ask for. As you’ll read in my mom’s first post, we have so many disability-related experiences in common, and yet our lives have also been quite different. This is a definite sign of how disability rights have changed over the years. 

Even though I am 52 years old, I do not think I have ever spent so much time pondering disability issues as I have since Emily, my daughter, started this blog.  The conversations we have had before, during, and after she writes her posts have been illuminating and have further reinforced how her experiences growing up with a visible physical disability have been very different from my own.

A little family history might be useful now.  My parents are unaffected by Larsen syndrome (LS); same for my older brother.  But I have a younger brother who like me has LS.  It was his birth that led the doctors to suspect a genetic disorder.  However, once our anomalies were diagnosed as LS, our family was assured it was a recessive disorder.  This means that both parents must have the defective gene for the condition to be passed on to a child.  Now flash forward to when I became engaged to my wonderful husband Marc:  we once again consulted with the same genetic specialists who told us that the gene for LS is so rare that we would not have an affected child.  But at my twenty-week sonogram with then fetal Emily, the telltale signs of LS were detected and we knew that our future as a family would again be forever affected.  Only then did the doctors realize that the LS affecting my family was really a dominant genetic disorder.

I am not going to lie – I was emotionally devastated when I knew Emily would face the same physical and emotional challenges that my brother and I did as children.  And truth be told, Emily has had to face even more hurdles and challenging surgeries such as cervical spine fusion when she was 17; she spent much of her senior year in high school in a halo used to stabilize her head and neck while it healed from the extremely risky operation.  But incredibly she has matured into a much more positive, confident, and outgoing person than I am.  While it would be wonderful to think her Dad and I can take all the credit for her successes, I think we truly owe a debt of gratitude to all the disability advocates who are responsible for the ADA and all the other programs and services for individuals with disabilities that resulted from passage of this landmark legislation.  Because of things like curb cuts, accessible bathrooms in public places, and accessible public transportation, people with all kinds of disabilities are much more visible in all our daily lives.  When I was growing up, other than my brother, we only regularly saw one other boy with a visible physical disability.

In addition to the benefits of the ADA, the development of the Internet has had a profound effect on how people with all types of disabilities can communicate today. When we were kids, we only knew of one other person with our orthopedic condition and this happened by a stroke of good fortune: I was perusing the TV Guide one day and saw an ad for the TV show ZOOM which was featuring a girl with LS.  We had to write to the TV station that produced Zoom to ask that they contact the girl and her family to see if they would be interested in contacting us.  They were, and a flurry of letters soon went back and forth.  Today, I am friends with this woman on Facebook, as well as being connected with many other people who either have LS or are the parents of an affected child.  The ease in which people with all types of conditions can exchange essential information and provide support via Facebook, Skype, etc. makes having a disabling condition so much less isolating.

While there is certainly still much work to be done, as Emily shares in many of her blog posts, having a disability no longer precludes participation in the usual childhood recreations or adult occupations.  For example, new playgrounds are being designed to include wheelchair access so all children can interact just as all new public construction projects (and many private ones as well) follow the principles of universal design to maximize the population of people who can enter and conduct the business of daily living.  And with the continued efforts of advocates such as my wonderful daughter, the sky is the limit as to what can still be accomplished!

The Complexities of “Curing” Disabilities

The Complexities of "Curing Disabilities" by Words I Wheel By
Posted on by Emily Ladau

I can’t count how many times I’ve been asked variations of the question: “If there was a pill that could cure your disability, would you take it?” Though the short answer is a resounding “No!” I rarely get the chance to elaborate on the complex feelings and emotions that are behind my answer.

Here’s the long answer: I definitely have moments where the thought of an instant cure gives me pause. I wonder what life might be like as an able-bodied version of myself. I try to envision myself walking around the mall or running after a soccer ball. I try to picture myself climbing a tree or jumping rope. But thinking about these things is mind-bending for me because they’re not part of my life. And I’m okay with that. I don’t have a burning desire to walk or run or climb or jump like an able-bodied person, because such actions have never been part of my life to begin with. Since I was born with my disability, I don’t feel that anything was taken away from me. It’s simply not possible to miss something I never experienced.

I think “cure” is actually a rather loaded term in relation to my disability, because to cure something implies that you are returning the body to its normal state.  My disability is my normal state. To cure me in accordance with the medical definition of the word would not only give me new abilities, but also essentially transform me into a whole new person. I can’t imagine myself as an able-bodied person, because I never was an able-bodied person. I’ve embraced my disability as a huge facet of my identity, and I take pride in it.

While I don’t define myself solely by my disability, having a disability has undeniably shaped who I am. Without my lived experiences as a disabled person, I would be a completely different Emily. And as tough as certain aspects of my life have been, and though I know I will continue to face disability-related challenges throughout my life, I wouldn’t trade my life for a minute. My disability has given me a place in a community and a culture; it has been the reason why I’ve had amazing adventures and unforgettable experiences. To walk freely up and down stairs for one day would never measure up to the things I’ve done because I have a disability.

So, my answer is still no. No, I would not take a pill for a cure. That being said, it’s not my place to judge another person for answering “yes.” I understand that disability is a highly unique experience from one person to the next, and I can’t say that my opinions on “curing” disability are the only way to think about it. For instance, it is completely reasonable to search for cures for degenerative or painful diseases and disabilities. If I could take a pill to cure the pain I experience, I would do that in a heartbeat. But I don’t want to change who I am. We should be looking to cure the pain, not the person.

We should not be trying to cure disability or disease because society sees it as something to devalue. And for that matter, if the reasoning behind “curing” disability is about eradicating differences from society, then I think we should cure society’s ableism instead. We should make it a priority to eliminate access barriers and prejudiced mindsets, rather than focusing on eliminating disabilities. But to find ways to relieve symptoms and improve quality of life for people – those are the right reasons to support finding cures.

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