Month: May 2016

Competitive Drive?

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Tomorrow marks the end of the National Mobility Equipment Dealers Association (NMEDA)‘s fifth annual Local Heroes Contest. Thank goodness! Why do I hate it? Let me count the ways…

  1. The name. We can get the obvious out of the way first. Local “heroes”? Clearly, the Association is referring to people with disabilities as heroes. It’s inspiration porn at its worst. The people, for the most part, entering the contest are regular, every day individuals that simply need some assistance with transportation needs. Being disabled does not equate to heroism.
  2. The design. You might say, “Well, Emily, some disabled people are heroes. What about the disabled vet who had his legs blown off in Afghanistan? What about the gal who tirelessly fought to expand independent living services in her county? Isn’t it great that the Association wants to get these people more mobile?” If only that were true… Instead, anyone can enter the contest. And the public at large votes for the top contenders. That’s right, my friend: the Association is merely sponsoring a popularity contest with the objective of getting its name out there.
  3. The private consequences. A new van generally costs around $60,000, depending upon the modifications required by each user. This makes it incredibly difficult for many people with disabilities to secure personal transport.  I entered the contest the first year, not realizing what a disgrace it is. I quit promoting myself after I realized at the vast majority of my friends with physical disabilities also entered the contest. Social media feeds began to get nasty, with friends arguing one was more deserving another. Not something I wanted to be a part of.
  4. The public consequences. Absolutely nothing. Can the Association demonstrate how the contest has benefited people with disabilities in an overarching manner? I think not. More groups have not been created to lower the cost of accessible vehicles. Individuals are still struggling to make it to health appointments and work on a daily basis. The contest has done nothing other than result in vehicles for a few people, whose contributions are generally unremarkable.

I would encourage NMEDA members to quit supporting such a ridiculous endeavor. Time and money could better be spent creating sustainable programs that would support more individuals in accessing their own accessible vehicles. Why not start a low-interest car loan program? Why not offer smaller grants to people that are genuinely engaged in heroic pursuits that benefit the disability community? It’s high time the existing contest hit the road.

Take a Seat: My Latest Complaint

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Although I’ve posted a bunch of book reviews lately, I haven’t shared much in regard to my personal life and activities. In truth, I haven’t gotten out much the last six weeks – on April 16, I fell out of bed and broke my femur and radius. Ouch! I’m healing, and have begun to regain my feistiness. Too bad for the Indy Eleven…

Because I still need help in light of the broken leg and all of the consequences it entails, my sister and I decided it would be helpful if our mom came to an Indy Eleven game with us to help with positioning, drinks, etc.  I went online to purchase a ticket for her – what is known as a “companion seat” in the ADA realm – but the Indy Eleven does not allow one to purchase accessible tickets from its website.  I know this was the case last year, when I tried to purchase companion tickets on several occasions, but it is unbelievable to me that, in its third season, the team is still not ADA-compliant!

I emailed the ticket agent, and he offered me a free ADA seat if I met him at Will Call. It was a nice gesture, but: (1) I had already purchased a ticket in a different section; (2) Will Call is impossible to get to once you are already inside the Stadium; and (3) it’s illegal not to offer people with disabilities the same opportunities to purchase tickets that non-disabled people have.  In other words, thanks, but no thanks.

While I was emailing the ticket people, I also asked if the team has any intention of marking the numbers for each seat in the disabled sections. The guy who responded said, no – seating is temporary. Gee, it’s kind of interesting that all seats are numbered except for the disabled section. Other disabled people regularly are parked in my season ticket seats. At the last game, there was an empty scooter parked in my spot.

My sister theorized that this is all strategic on the part of Indy Eleven. She theorized that, eager to produce facts that would support the building of a new stadium, management is doing when it can to incite and gather as many complaints as possible about the existing stadium. Well, Indy Eleven, you have your wish. Monday I filed my first complaint with the Indiana Civil Rights Commission.

Review: If at Birth You Don’t Succeed

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Remember Zach Anner? The disabled demi-god of YouTube is now out in print – his autobiography, If at Birth You Don’t Succeed: My Adventures with Disaster and Disability, is absolutely hilarious and well worth a read! I was prompted to make the purchase after Zach graciously agreed to Skype with a nonprofit I’m involved with, NMD United.

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Anyway, the book tells the story of Zach’s life, largely focusing on career and relationships, through the latter half of his 30 years. What makes Zach’s story unique – in addition to his winning a show from Oprah – is his sense of humor. And, because he has CP (cerebral palsy, or the sexiest of the palsies, for then initiated), his cripple jokes are particularly funny to me.

My only criticism of this book is that I wish Zach would have spent more time discussing childhood and what he went through while in his high school years. I understand that these were more difficult, and probably less interesting than his years in Austin and LA, but it would’ve been nice to get a more complete picture of the awesome guy presented in the book. (Maybe I’m partial – he was just as congenial and kind in person as he sounds in print.)

If my review hasn’t yet convinced you to put this book on your shelf, it comes with funny pictures. When’s the last time you had the chance to read an illstrated book?!

Review: Evicted

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Yes, another housing book. This time, Matthew Desmond’s Evicted: Poverty and Profit in the American City. Not only did the book come recommended by one of my former law professors, but also, strangely, a former love interest. But I digress…

Desmond, a Harvard professor and winner of a MacArthur Genius grant, demonstrates the toll eviction takes on families by following several evicted Milwaukee residents. His subjects come from various backgrounds and demographic categories – both black and white, gay and straight, disabled and able-bodied. Their common features? Poverty and eviction.

Interestingly, and part of what makes the book so unique, is that Desmond is honest with his narrative. Clearly, Desmond has an agenda, as outlined in the book’s epilogue.  While one may believe someone pushing a universal housing voucher program and expanded public legal aid programming would want the victims of eviction to sound sympathetic, Desmond exposes that one renter spent all of her food stamps on lobster tails and king crab, on which she gorged herself one night. Another renter left her children unattended, and the youngest died in a fire

Although I cannot say that I liked any of the people featured in Desmond’s book, I could relate to them. Desmond does a good job of showing that the featured renters are simply people,  with flaws and gifts that could be shared if circumstances permitted. In the same vein, Desmond also shares stories of two landlords, neither horrible villains nor sacrificing heroes.

Indeed, it is these complex relationships between tenant and landlord that cause the book to stand out. Certainly, Desmond gives the reader well-researched statistics and history regarding eviction in American cities, both past and present, but these statistics can be gleaned easily from the many housing papers and books available.What readers did not previously have access to was a candid glimpse into how eviction comes to be, how it affects both landlords and tenants, and its effects on the greater community.

Because I did enjoy the book, I would be remiss if I did not point out my disappointment that, on multiple occasions, Desmond refers to people with disabilities as “invalids.” For all the care he takes in representing other minorities fairly, using a word like invalid is seriously bizarre. Perhaps the Milwaukee winter froze the thesaurus inside his head???

Review: Smoke Gets in Your Eyes

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I have resisted my penchant for All Things Morbid for some time, but couldn’t manage to force myself not to read Caitlin Doughty‘s Smoke Gets in Your Eyes: And Other Lessons from the Crematory.  It seemed fitting literary romp for the gal whose Make-A-Wish was to go to Salem, Massachusetts for Halloween. In fact, one of my favorite books of all time is Mary Roach’s Stiff.

Doughty’s book began wonderfully – full of wit, and eyes-wide-open. We learn why she chose mortuary work, and get to learn fun facts and figures about the funeral industry. Some subjects, like stillborn infants, are written about with grace and intrigue, which I can respect as an incredibly difficult juxtaposition to manage, let alone pull off with Doughty’s finesse.

Yet, my beef is in book’s perception of human dignity, not significantly discussed until the end of the book. Part reference book and part memoir, the reader learns about how certain bodies caused the author to reflect on her own life, love, and mortality. Discussing a particularly poignant exchange, Doughty remembers a “wheelchair-bound” widow that she believes “should have been the first to go.” In addition to these stereotypical conclusions, she also infantilizes the widow; after receiving his wife’s cremains, the widow “just thanked me in his thin voice, and cradled the brown box in his lap like a child.” Why should someone that uses a wheelchair die before his able-bodied wife? Why is he any less vital than any other grieving spouse?

It’s not that Doughty has ill-intentions toward the disabled widow; in fact, when he is brought to the crematory not long after, Doughty weeps for the loss of love – deep, beautiful love – that he and his former wife had. Their love is something that Doughty appears to envy. Why not, then, respect other aspects of his life?

It wasn’t until reading this book that I began to realize the deep roots of ableism in American society. I had always written the time off as liberal mumbo jumbo. But when the author began to talk about dignity, linking it with death, I grew alarmed. Doughty even references a piece by Atul Gawande (who also writes beautifully about mortality), and questions whether grandma and grandpa should be enabled to try and cheat death through medical intervention. Why not, then, the poor widow in a wheelchair?

Indeed, Smoke Gets in Your Eyes got me thinking. Just probably not in the way the author intended.

Indiana Primary and the Traveling Board

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Thus far, I’ve been mum about the Indiana primary coming up on Tuesday. This  election season has been strange, turbulent, and intense. I’ve been hesitant to “endorse” any candidate, partially because I don’t want to be accused of racism, stupidity, or any other negative label I don’t believe truly applies. It’s also the case that no candidate particularly supports the comprehensive package of policies I believe is in American interests. Nevertheless, I did choose a Republican presidential candidate and cast my vote for him yesterday.

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Now, politics aside, my absence from this blog for the last several weeks is due to the fact that I broke my femur and radius on April 16. (Putting together comprehensible sentences is tough, whether the painkillers have kicked in or I’m dealing with the pain.) I began freaking out, worried about getting to my polling place with a ridiculous leg immobilizer. Fortunately, I found out about the Traveling Board.

Of course, voters that cannot go to their polling place have several options.  Many counties permit people to vote early, sometimes at multiple satellite voting locations. Another popular option is the absentee ballot, which I used to vote when studying for a semester in DC in college. However, both of these options are tough for me – I need transportation to an early voting site, and I need a trusted individual to stick my absentee ballot in the mailbox before the deadline. The Traveling Board is an awesome option because people bring the ballot to your home and take it back with them.

A gentlemen and lady came to my home at the scheduled time – 4 PM, right on the dot – and brought a clipboard, ballot, and pen. They helped me position the ballot just where I needed it and were quite nice. In fact, they even brought me a sticker for voting!

I hope my fellow Hoosiers all vote this Tuesday. With the range of options available to us, there are no excuses for escaping your civic duty!