Is the Party Accessible?

In the latest issue of the National Review, Reihan Salam asks: “How can Republican ideas get a hearing among minority voters?” His article, A Party for All, devotes much of its space musing on whether Rand Paul and Chris Christie’s work on criminal-justice reform might garner more productive exchanges between black voters and the Republican party. In the end, Salam argues:

[T]he best way for conservatives to appeal to African Americans is not to emphasize racially specific themes on criminal-justicee reform or any other  issue, but rather to offer a compelling message to middle- and lower-income voters of all races.  The conservative-reform agenda . . . aims to reduce the intrusiveness of government and its tendency toward excessive regulation, yet it also recognizes the importance of making the public sector work for Americans looking to climb the economic ladder.

I sincerely hope that Salam and fellow conservatives recognize that racial minorities are not the only groups worthy of extra GOP attention. Comprising approximately 20% of the population, people with disabilities are a huge voting bloc, a bloc that tends to vote liberal. Many friends with disabilities believe that Republicans do not care about them, and the GOP has done little to counter these claims. Instead, we are swept up with the “takers,” forgotten as attacks on Medicaid are waged, and — I believe — are misunderstood.

Ironically, there are many policy areas ripe for collaborative reform between people with disabilities and Republican wonks. Union demands are wrecking havoc on people with disabilities’ ability to live independently; the Obama administration is doing away with the FLSA’s companionship exemption, meaning that many caregivers will have their hours cut and individuals needing care are scrambling to find new help. Bureaucratic interference and inflexibility prevent many with disabilities from using their Medicaid long-term care hours in an efficient way; for example, since unused hours cannot be rolled-over for emergency use, many ask for more “just in case” hours which are unnecessary. And, though many are capable and desirous of employment, 96% of severely disabled individuals are unemployed.

Someone from within the GOP ought to build a ramp so my disabled pals can join the party. I think, once inside, they’d enjoy it.

What’s in a Name? Families of SMA Becomes Cure SMA

On August 25th, Kenneth Hobby and Rich Rubenstein, President and Chairman, respectively, of Families of SMA, announced that the organization would henceforth be known as Cure SMA. They emphasized that, while the Mission remains unchanged, the new name will serve as a “rallying cry” for a broader audience. Since the announcement, there has been some crying — a crying out by those adults with SMA who take personal offense to the change.

Before the disability rights movement, people with disabilities were looked on as broken beings, in need of medical intervention, desperate for a cure. They were abnormal under this paradigm, known as the medical model. With the disability rights movement came the social model of disability. From this perspective, disabilities are a part of human variation, and their limiting effects are largely due to society’s failure to accommodate. Society is responsible for problems accompanying disability — not the disability, and most certainly not the person with the disability.

The social model, combined with increasing empowerment amongst members of the disability community, has led to many people with disabilities claiming that if a cure were offered, they would not take it. This view is especially common among people with genetic disabilities who have known nothing else, such as those with SMA. For them, their entire lives have been shaped by disability, and to eradicate such a contributing factor in their personhood would eliminate them.

Even if a cure were accepted, many adults have weakened to the point that cure is unfeasible. Rather than clinical trials, they need durable medical equipment, personal care services, and decent transportation. If money is directed to research rather than supports for these “lost causes,” they cannot expect a decent quality of life. And, critically, this leads others to believe these disabled lives are worth less. For the foregoing reasons, many adults with SMA take issue with the Cure SMA name.

Other adults with SMA stand (or, perhaps more accurately, sit) by the decision. Cure SMA Board Member Melissa Milinovich writes on her Facebook page:

When this idea first came to the board, I will admit, I had to do some thinking on it. I wasn’t sure how I felt about the word ‘cure’ so I had to do some soul searching. What I realized is this, everyone in the community, whether they want to admit it or not, wants a cure. That being said, it’s perfectly fine to have differing meanings of what a cure means to every individual. For example, a cure for me does not mean I’ll get up and walk; it means the progression will stop and it’s no longer something I have to worry about. I’m okay and have accepted that. On the other hand, to a newborn baby, a cure would mean that he or she would never even know what life with SMA is. I’m okay with that too!

Yet the fact remains that “cure” does have a definitive meaning in the English language. Stopping SMA’s progression is not within the definition; reversing its effects is.

The name “Families of SMA” emphasized people. It suggested support for the individuals living with the disability, whether directly or through affiliation. “Cure SMA” does suggest action, but it also transfers focus from people to the disability. Personally, I think that’s a mistake. But I would put forth that the greater mistake is Cure SMA’s failure to hear so many of its moral owners. If this “deafness” can be “cured,” I urge the organization to start there.

Throwing Water on SMA Awareness Month?

The Ice Bucket Challenge is the meme of the month. In case you’ve been living under a rock, the idea is that, if called out or “tagged” via social media, you dump a bucket of ice water on your head or donate $100 to the ALS Association. Once complete, the participant calls on friends to do the same. Interestingly, the fundraiser has been heavily critiqued.

Initially, I was frustrated because August is SMA Awareness Month. What is SMA, you ask? SMA is the acronym for spinal muscular atrophy, a muscle-wasting disease affecting individuals in their youth. Although the cause is different, SMA essentially manifests as ALS for kids. The disorder affects 1 in 6,000, and pretty much is a pain in the ass (sometimes literally) for those who have it. It’s no picnic for their families, either.

While worried that the Ice Bucket Challenge might confuse the disorders or divert SMA donations to ALS charities, until now I’d kept it to myself. I have a difficult time being nasty to those doing good works. Further, there are only twelve months in a year and far more diseases needing to be researched. Okay, I thought, neuromuscular disease crips could band together.

Others did voice concern when their charities of choice were ignored. In particular, proponents of clean drinking water in third-world countries balked at Americans “wasting water.” These comments did more than irk me; they seemed a thinly-veiled attempt to divert donations. If nothing else, sour grapes are always unpleasant. The rationale of we-should-not-use-water-excessively-because-others-lack-it is nonsensical in this situation. Am I going to ship a bag of ice to Haiti? No. Do those with ALS expect people to stop walking because they can’t? No.

One criticism, however, appears quite valid. In a Telegraph article, Willard Foxton refers to the Ice Bucket Challenge as “a middle-class wet-T-shirt contest for armchair clicktivists.” Although the article does not elaborate on the phenomenon at length, “clicktivists” tend to donate social media space and time in lieu of cash. Awareness is great, but cash is king as far as non-profits go. Fortunately, many participants have started donating and dumping. 

If you’d like to help both those with ALS and SMA, consider making a donation to the Muscular Dystrophy Family Foundation or Muscular Dystrophy Association.

2014 Access and Inclusion Awards

I have been on a blogging hiatus, but I would be remiss if I completely failed to mention the winners of this year’s Access and Inclusion Awards. On July 31st, Mayor Ballard and his Advisory Council on Disability met at the Arts Garden to recognize:

  • The staff of the Indianapolis International Airport, winner of the Accessibility Award. In her presentation of the award, Emily Munson humorously explained that the Airport deserves to be commended for well-trained staff who aide disabled passengers with competence and respect. Perhaps upon learning this, less Hoosier travelers with disabilities will limit themselves to road trips?
  • Eskenazi Health, winner of the Employer Award. Eskenazi has recently begun a paid internship program for students with disabilities. Several current interns spoke, sharing that they were inspired by coworkers and enjoyed having some jingle in their pocket.
  • The Department of Public Works’ Solid Waste Team, winner of the Exceptional City Service Award. Did you know that disabled and elderly City-dwellers that cannot bring trash to the curb for pick-up can arrange for assistance from the Solid Waste Team? In rain, snow, and sleet, these guys are still on the job, giving extra help to thousands! Exceptional? I think so!
  • Melody Cooper, winner of the James Pauley Lifetime Service Award. John Dickerson of The Arc heaped praises upon Cooper and her tireless work on behalf of those with intellectual and developmental disabilities. He emphasized her service as President of Self Advocates of Indiana.

Congratulations, all!

Out with the Old, In with the New

Approximately two weeks have passed since it was announced that Indiana Family and Social Services Administration (FSSA) Secretary Debra Minott would be leaving. After a year and a half on the job, word has it that Minott and Governor Mike Pence had irreconcilable differences over how — and when — the rollout of HIP 2.0 would occur.

The following week Hoosiers learned that a former secretary, Michael Gargano, will serve in an interim capacity until Dr. John Wernert takes the helm in July. Wernert’s background is impressive, both in terms of education (he is a psychiatrist with a Master’s in health administration) and stature (he is presently President-Elect of the Indiana State Medical Association). It should be interesting to see in what direction he takes the Agency!

Dead Meat in the Street

Last week, one of Indy’s top news stories was that a wheelchair user was struck and killed by a car. Numerous posts on my Facebook feed contained a gory photo of an empty wheelchair, on its side, in the middle of the road.

I was annoyed that the victim wasn’t mentioned by name or gender in initial reports. Sure, I understand that a victim’s family must rightfully be notified before the public. But to take away any identifying characteristics strips away her humanity. Yet the media did not wait for more information; instead, we saw a pool of blood under some mangled metal. If the media can’t get inspiration porn out of someone with a disability, I guess it’s happy to settle for a torture porn still.

Fortunately, I didn’t read any comments from trolls arguing that the woman was in the wrong. Some people were genuinely saddened at the loss, and suggested devoting more funding to improving sidewalks. I suppose the sidewalks to the bus stop could be paved with good intentions.

No wheelchair user I know believes sidewalks are Indy’s biggest transportation barrier. Nor will an expanded bus system do much to improve city access. We need legitimate mass transit, a light rail system. I can’t help but wonder if having such an option would have led to one less fatality statistic.