Emily Ladau - Words I Wheel By

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

Posted on October 8, 2013August 12, 2021 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!

Just One of the Guys – A Critique of the Wheelchair Basketball Guinness Commercial

Posted on September 5, 2013October 4, 2023 by Emily Ladau

I think it’s safe to say one of the first things students learn in Marketing and Advertising 101 is that one of the best ways to pull viewers in is to tug at their heartstrings. A prime example of this approach can be seen in a new commercial for Guinness beer.

As I started to watch the ad, I was impressed by the accurate portrayal of a wheelchair basketball game, enough so that I could (almost) overlook the sappy background music. But then, as the men exit the gym, a deep voice goes on to say: “Dedication, Loyalty, Friendship…The choices we make reveal the true nature of our character.” To me, this seems to relegate disabled people to the status of a community service project.

The brand’s tag line, which is shown at the end of the commercial, is “Made of More.” Of course, this refers to the beer, but there is arguably a double meaning behind it. When a commercial makes you feel warm and fuzzy, you’ll associate those positive feelings with the brand that’s being promoted, thereby making you more likely to buy the product, which in this case, is the Guinness. Essentially, the underlying message of the ad is that it demonstrates good character when an able-bodied person befriends a disabled person. Those who do so are “made of more.”

At the end of the commercial, all the men who were playing basketball are hanging out and drinking Guinness. If Guinness had made a commercial in which a bunch of guys were out on a Friday night drinking together, and one of them just happened to be in a wheelchair, that would have been great. They could have made an inclusive ad without making it seem like spending time with a guy in a wheelchair means you’re a good person. He should have been just one of the guys without calling so much attention to it. Personally, if I made the commercial, I’d have had an empowering rock anthem in the background, eliminated the sap, and then after the game the guys would have gone out for drinks. That would be have been an awesome commercial.

Instead, Guinness objectifies disabled people. The message that choosing to be friends with a disabled person makes you a saint is constantly perpetuated by the media and it needs to stop. Disabled people are not here so we can make nondisabled people feel good about themselves. And yet, that’s exactly what this commercial seems to accomplish. You don’t have to take my word for it though; just read some of the comments under the video in the link I shared and you’ll see tons of people saying things like “this brought tears to my eyes” or “this was the nicest thing I’ve ever seen on television.”

Nicest thing for whom? Nice for you, the nondisabled viewer, because you can sit on your couch and feel momentarily good about the state of humanity? Would your eyes still well up with tears if the commercial showed a bunch of sweaty dudes without wheelchairs playing basketball and grabbing a beer? That doesn’t sound like a tear-jerker to me!

It is clear that the commercial tried to show the men building each other up and supporting each other, which is absolutely a great idea, but I question if Guinness considered how dehumanizing it actually is for disabled people to be depicted as needing kindhearted non-disabled people to pay them some attention. The friendship between the guys in the commercial is certainly portrayed as genuine, and that’s admirable, but why is friendship among diverse people so emotional and inspirational? That should be the norm…it’s 2013!

Including disabled people, whether in real life or in the media, is fantastic and definitely necessary. I’m obviously a huge advocate for inclusion both on and off the screen. But it’s time for advertisers and other media outlets to do it right. Disabled people are just people, not your good deed for the week. By representing inclusion of disabled people as inspiring, this both reflects existing social stigma and can cause nondisabled people to continue to subconsciously perceive us as somehow being less than. It’s time for disabled people to be portrayed realistically instead of stereotypically, because ultimately, everyone on this planet, disabled or not, is just one of the guys.

The Complexities of “Curing” Disabilities

Posted on August 15, 2013August 12, 2021 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.