Third-Place Team Still #1

This weekend, I headed to Fort Wayne, Indiana for the 2016 MK Battery Premier Cup. For those of you unfamiliar with power soccer, check out this awesome video (made by my sister/teammate) and the United States Power Soccer Association. My team, RHI  Sudden Impact, finished third.


I know – why would such an awesome event be held in Fort Wayne, of all places? In the past, we’ve gotten to travel to Tampa, Phoenix, or at least stay in Indianapolis. There is one cool thing I can say about Fort Wayne, though. The Plassman Athletic Center has power soccer courts. That’s right – the court markings are actually inlaid!

Another awesome fact? I got to use a Strike Force wheelchair for the first time! In the photo above, one of my teammates, Emmanuel, is missing. (Apparently he got a better offer and traveled to Virginia Beach to celebrate high school graduation.) So I got to use his $8000 sporting chair and spin myself dizzy. Suddenly, the sport became much, much more fun!

I’m looking forward to next year, where we will shoot for the championship. Aside from how awesome it was to win my first power soccer trophy after approximately a decade of playing, my hilarious teammates and coach definitely make RHI Sudden Impact #1 for me!

Dear(ly Departed) Julianna

My heart is broken. Many of you are familiar with the awful tragedies that have affected Orlando as of late – an absolutely horrific terrorist attack at a gay nightclub and a boy killed by an alligator at Disney World. But the death of Julianna Snow also occurred recently, going largely under the radar.

You may have heard of Julianna, the five-year-old girl who media outlets portrayed as choosing “heaven over hospital” in the event she got sick again. I, and many of my friends with neuromuscular disabilities, felt a special kinship with Julianna. She, too, shared a neuromuscular disorder that involved use of a wheelchair and respiratory therapy. (She also believed one could never have too much glitter, which I personally feel is a great motto.) News coverage and the underlying news item – that Julianna’s parents would allow a child so young to refuse life-saving measures – concerned us deeply.

Aside from personal views, the item was probably deemed “newsworthy” because it diverges from bioethical and medico-legal norms. Under American jurisprudence, one must give informed consent to treatment. Similarly, one needs capacity in order to exercise the right to make autonomous medical decisions. Traditionally, and as practiced by the American Academy of Pediatrics, whether or not minors can give consent is governed by the Rule of Sevens. That is, children younger than seven lack the capacity to make medical decisions; children ages seven through 13 have sufficient autonomy to be consulted in decision-making processes; and children ages 14 and above are sufficiently developed to participate heavily in the decision-making process. Keep in mind that Julianna’s parents surrendered decision-making authority to her at age five.

I don’t doubt that Juliana’s parents cared for her. Their compassion is evident in family video. But Juliana’s parents were heavily influenced by the medical model of disability; her mother is a physician. Because doctors cannot cure disability, they tend to be baffled by it. In fact, physicians regularly underestimate the quality of life experienced by people with disabilities. And there is no doubt that Dr. Moon (Julianna’s mother) glorified heaven, describing as a place where Julianna could run and play

Are you beginning to see the problem? Even in a wheelchair, even with a ventilator, Julianna could have driven quickly enough to feel the wind blow through her hair and engaged in a bevy of joyous activities. To demonstrate the bright future awaiting Julianna, Emily Wolinsky launched the Dear Julianna Project, administered by NMD United, a peer-led advocacy group for adults with neuromuscular disorders. Many adults with disabilities – from around the world – wrote not only to Julianna’s family, but to the families of other diagnosed children, to share that the future is not doom and gloom. We have each had our fair share of hospital stays and unpleasant medical procedures, but we are also attorneys, artists, spouses, entertainers, volunteers, philosophers, and parents.

I often wonder whether Julianna had the opportunity to read any of our letters (or have them read to her, considering her age). Her parents were aware of the Project, and claimed it was “basically a slap in the face.” Again, Dr. Moon’s reaction shows a real failure to understand the disability perspective.

I hope you are happy in heaven, Julianna, but I don’t care whether you remain in a wheelchair. It need have no bearing on the enjoyability of one’s existence.

The author wishes to disclose that she is a participant in the Dear Julianna letter-writing campaign, and also contributed financially to it. 

Lame Symbology

I feel like Peter Griffin when I say that the Accessible Icon Project really grinds my gears. Of course, I actually do have gears, riding around in a wheelchair and all…

So what is this Project of which I whine? If you are not a hermit – and maybe even you are – you should recognize the International Symbol of Accessibility (ISA). MUTCD_D9-6.svg.pngMost commonly, this symbol isused to mark handicapped parking spaces, but it also indicates the presence of other accessible design features for people with disabilities. It features a stick figure sitting on a wheel. Pretty standard… It does the job, and has been doing it for nearly 50 years!

If it ain’t broke, I say, don’t fix it. After all, people with disabilities have enough things to worry about. Is a symbol really worth launching an entire movement?

Apparently Sara Hendren and Brian Glenney think so. In 2009, the two began graffiti-ing ISA symbols in New York City. The new design purports to show people withaccessible-icon.jpg disabilities as more than mere stick figures, but rather active, engaged participants in community life. The Accessible Icon Project was born, and some disability activists began stickering or lobbying campaigns of their own to get the new symbol more widely adopted.

At this point, I imagine you might be wondering why someone who purports to be a disability activist herself would be irritated by the new depiction of accessibility. Because the new symbol prioritizes physical activism. The new symbol is still a disabled stick figure in a wheelchair. The difference is that the stick figure is now pushing itself in a manual wheelchair.

Certainly, the visual alteration is minor. But the message is not. To argue that the new symbol is “better” than the ISA is to determine that having the ability to physically steer oneself is better than alternate means of direction. People with disabilities should be concerned about philosophical and actual self-direction – which still have not been achieved by far too many – not physical propulsion. Essentially, the new symbol is ableist.

I had not thought about the new symbol until I spent the weekend in New York. I was visiting Siena CollegeIMG_0255.jpg and happened to park in a space marked with it. I had forgotten that New York became the first state to require that the ISA be replaced with the new symbol. As a person with a disability, legislation like that frustrates me even more. Instead of mandating that people with disabilities should have equal access to home and community-based services, legislators are wasting time paying lip service to politically correct iconography. (And people wonder why Trump is doing so well in the polls!)

Moreover, I don’t think it’s fair to ask businesses to replace the existing universal symbol of accessibility in favor of the latest fad. It costs money. While I do believe that businesses have an obligation – morally, in addition to legally – to make reasonable accommodations for customers, I think it is short-sighted to ask them to pay for alterations that make no substantive difference to disabled people. If business owners are passed off, I don’t blame. But I do worry that they won’t be as receptive in the future to civil rights legislation that actually does make a difference.


Review: Crippled America

Yup. I did it. After weeks of hemming and hawing about whether I should read it, I finally picked it up. Blame it on the fact that I was stuck in a hotel room for four hours with nothing else to do or blame me for not resisting the title. Either way, I have digested Donald Trump‘s Crippled America: How to Make America Great Again.


As I recently joked in an MSNBC article, I was initially excited about the tome. Was a presidential candidate actually devoting an entire book to disability policy? Would we finally have a comprehensive long-term care program? New incentives for employers to hire people with disabilities? Of course, no such luck.

Crippled America is classic Trump. In fact, the first few pages of the book are actually devoted to discussing Trump’s portrait on the cover. He explains why he chose to scowl rather than smile. He also repeats things again and again and again – especially why he is a winner. But, if the reader can get past the self-praise with a few eye rolls, the book is not a complete bore.

Trump has received much criticism about his supposed lack of nuance and policy detail. Crippled America does answer some substantive policy questions. For example, readers learn which tax rates Trump would like to see enacted, in addition to the two tax loopholes he is in favor of keeping. Readers will also get a better understanding of Trump’s healthcare ideas (or admitted lack thereof). Trump explains that he has evolved from believing a universal payor system best, but is open to hearing from experts regarding what type of plan should replace Obamacare.

Because people should be voting in November, I do recommend they read this book to better understand Trump the candidate. I can’t say it’s “fun” or academically challenging, but it is important.