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.

 

Competitive Drive?

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

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

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: Smoke Gets in Your Eyes

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

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!

Review: Telethons

As soon as I heard the late history professor and disability rights advocate Paul K. Longmore was writing a book about telethons, I got excited. As someone with spinal muscular activity, the annual Jerry Lewis MDA Telethon on Labor Day was a big deal. When I was younger, I was excited to be on my local TV broadcast, telling stories about MDA camp and friends with neuromuscular disorders. In my mid-teen years, I began to hate what the Telethon stood for – pity, exploitation, and fearmongering. Longmore’s book, Telethons: Spectacle, Disability, and the Business of Charity summed up all my feelings and introduced me to some new revelations.

Longmore’s impeccable research focuses on four major American telethons: the United Cerebral Palsy Association (UCP), the Arthritis Foundation, the National Easter Seals Society, and the Muscular Dystrophy Association (MDA). The UCP was the first charity to begin a multi-hour fundraising program for disabled beneficiaries in 1950. However,  the MDA created the “modern” telethon, reaching 100 million viewers at its pinnacle.

Of course, telethons are now generally viewed as relics. Their decline began in the 1980s, when more of the television audience demanded regular overnight programming. Moreover, the Federal Communications Commission under the Reagan administration deregulated the requirement that local television stations provide community service programming. As such, stations began requiring that the charities sponsoring telethons pay akin to what stations were losing in preemptions and other revenue. Longmore states that the price was sometimes more than $250,000 per hour! (No wonder the MDA recently decided to terminate its telethon programming.)

Interestingly, the decision to nix the telethon drew great criticism from not only some beneficiaries, but also many donors. Longmore writes that telethons “democratized giving.”

No longer relying mainly on a social elite’s sense of noblesse oblige, it mobilized mass publics and sought to instill in them the habit of giving. In reaching the public through the mass media, charity fundraising reflected and reinforced the interpersonal disconnectedness of modern life as it widened the social distance between givers and receivers.

Indeed, Longmore documents the specific role that each participant played – sometimes gleefully, sometimes unwittingly.

Until reading Telethons, I was unaware of the benefits corporate sponsors received by issuing donations to telethons. Obviously, their appearance helped generate goodwill for the companies and their management officials. But asking viewers to purchase a product in order for a portion of the purchase price to go to a particular charity boosted corporate revenue immensely. For example, by offering a charitable donation, American Express increased credit card donations by one-third and yielded $17 million! Known as “cause-related marketing,” corporate public relations officials bolstered profit. Need more proof? “Former executives at two of the charities confidentially disclosed that their telethons lasted as long as they did only at the corporate sponsors’ insistence.”

Donors benefited from their ability to engage in “conspicuous contribution.” They could pick up the telephone, throw a few dollars at a problem, and have the whole world know they did a good thing. Whether having their name posted on the Star Board or sharing photos of themselves locked up in a faux fundraising prison, donors enjoyed the gratification of public praise. Longmore also suggests that some donors of a conservative bent may have preferred charity models of healthcare to government-sponsored healthcare, meaning that, by donating, they could keep socialist reforms at bay.

And, certainly, poster children played their part as well. Easter Seals trained local offices that “children raised more money than adults. Donors “sympathized with images of ‘the most weak.'”  (It should be noted that, at least as far as Lewis was concerned, poster children couldn’t be too weak – “he says he doesn’t want to bend over a wheelchair to raise a buck.”)  Couched in the “narrative techniques, character, and plot devices used in sentimental literature and Victorian fiction, [telethons used poster children in] combining three standard sentimental devices: unmerited affliction through illness or accident, the suffering of children, and emotional excess.”

In addition to this basic overview, the book offers far more insight.  Readers will learn about how Lewis enforced patriarchal culture by branding his “Kids,”  how Jerry’s Orphans fought back in an effort to regain stolen dignity, and how the medical model persisted throughout charitable engagement. With my weak SMA-“afflicted” thumbs, I give this book two thumbs up!

The Left Advocates Discrimination on Basis of Disability

Last week Indiana Governor Mike Pence signed House Enrolled Act 1337 into law. Pro-abortion advocates on the left instantly began howling that Pence, a cold-hearted Republican, is encroaching on women’s rights. However, many of the same advocates refused to acknowledge that the Act forbids discrimination on the basis of disability. Indiana Code 16-31-2-1.1(1)(K) now provides:

That Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex, or diagnosis or any potential diagnosis of the fetus having Down syndrome or any other disability.

Those on the left argue that Pence and fellow Republicans are using these protected classes to further their agenda, without actually caring for members of those classes. To their credit, I don’t know that parents traditionally opt for abortion based on factors like ancestry. However, mothers do regularly abort fetuses with diagnosed disability.

The numbers are startling. For example, 87% of fetuses diagnosed with Down syndrome are aborted.  Another site puts the number at 92%.  If this is not obvious discrimination against the disability community, I don’t know what is. And I am horrified that local disability organizations are more interested in pushing a liberal agenda then celebrating steps taken by the General Assembly to reject eugenic ideals.

Many expect that the new law will not stand up to judicial scrutiny. We shall see.  But I am jubilant that Indiana, the first state to adopt eugenics laws, is now on the forefront of protecting disabled fetuses. (I’m experiencing a bit of schadenfreude, too, now that liberals have been cornered into choosing which traditional voting block – e.g., fertile women or people with disabilities – to which they will pander.)

Wheels on Wheels

When you ask people with disabilities about their number one barrier, transportation is a frequent reply. (More than 500,000 people report never leaving their homes due to lack of transportation. For more on this, and other alarming statistics, look here.) In addition to being an American symbol of freedom, personal vehicles are often necessary to maintain employment, social contact, and good health. Public transportation is not available in rural areas, and even city paratransit services often leave those with disabilities waiting for hours. Although urban millennials have been pushing for more universal public transit, legislatures like my own Indiana General Assembly are stuck in old transportation paradigms.

I am fortunate enough to use an accessible vehicle purchased by my parents, a 1999 Chevy Savana, modified by a previous owner. (See here for a lively visual and rap song.) However, we learned in April 2015 that the van would no longer be insured as of April 2016. Apparently it was too old. Thus began the process of trying to get a new adaptive vehicle.

Vocational Rehabilitation (VR) programs exist in every state, a jointly funded state and federal program to help people with disabilities achieve and maintain employment. Where a vehicle is necessary for job success (e.g., one needs a vehicle to drive to work), VR will pay for the cost of vehicle modifications. Unfortunately, VR only purchases the modifications – that is, the lift or ramp, the wheelchair tiedowns, etc. – and the client is responsible for providing the vehicle. Individual VR programs set rules regarding the type of vehicle that they will modify, frequently requiring new or gently-used ones in order to ensure that the modifications will be used for years to come. Effectively, this means that people, who sometimes are not even employed yet, are on the hook to purchase a $30,000 van. Yet, because modifications run upwards of $20,000, going through VR is worth it.

I contacted my local VR office in May 2015 and expressed my desire having my case reopened. The local supervisor stated that a new case would have to be opened, given the expensive nature of my request. Okay… I was then informed that I could get in for an appointment in September, a clear violation of VR regulations. Good thing I’m a lawyer, huh? After some self-advocacy on my part, we finally got the paperwork started.

*DRUMROLL, PLEASE*

Today, I finally got my van I named her Clover, in honor of St. Patrick’s Day, and because I know how lucky I am to have her. I’m grateful for the financial resources to purchase the Dodge Grand Caravan, and for the taxpayer-funded $22,000 in modifications.

I still wonder what happens to people who are looking for jobs and can’t yet afford the price of a modification-ready vehicle. To my knowledge, no private funding sources currently exist. Some public funding is available to veterans, but not the average cripple. Do you have any creative solutions for the funding of accessible vehicle?