A Global Challenge: Aiding those with Disabilities

http://www.cnn.com/2013/10/21/opinion/sonenshine-disabilities-disasters/

It’s hard to believe that in 2013, society is still leaving 1/7 of the population out of something as important as emergency relief. This article states that during natural disasters, disabled people are not able to receive adequate help. Emergency buses are not wheelchair-friendly, deaf people cannot hear sirens, and too many people are being affected due to the lack of concern. While other rights like employment, fair treatment, and ownership are being improved for disabled people, slowly but surely, I find it preposterous that they are not even given the right to survive through a disaster in this country. This utter neglect can only be the result of ableism and the disregard for disabled people by society. I think we can all agree that the government needs to prioritize the lives of ALL people, not just those who are easiest to help.

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Heard, but not seen.

If I were asked to describe a typical appearance of an individual with a disability, my mind would immediately go to the aesthetics. In other words, I’d picture wheelchairs, walkers, corrective footwear, and other various devices so commonly linked to the disabled. But disability reaches far beyond the narrow scope of visual representation. Oftentimes, for myself, as well as for other able-bodied individuals, disability that can’t easily be seen is tremendously difficult to understand.

Three years ago, both my grandma and roommate were diagnosed with Systemic Lupus Erythematosus (SLE). For those who are unfamiliar with the condition, lupus basically causes one’s body to attack itself. Flares and remissions are sporadic. On a given day, my roommate may feel free of pain and symptoms. Throughout this same day, however, my grandma might be confined to her bed and unable to keep any food down. If and/or when either will have a flare cannot be predicted.

Because this disease primarily disables the functions one’s internal organs and tissues, the effects of lupus are not as visibly detectable as are those of Down syndrome or cerebral palsy. Thus, my roommate and I have found that communication is a crucial component of our friendship. We attended the same high school in a particularly rural area. Upon moving to Philadelphia, we both wanted nothing more than to explore every single Philly nook and cranny. I, selfishly neglecting the unpredictable nature of lupus and its not-so-visual, detrimental effects, assumed she was well and tried to keep the two of us going at all times. Fortunately, though, she forgave me for my naivety. We now discuss her feelings and pain levels each day and plan accordingly.

My roommate shouldn’t have to explain herself. However, I am so appreciative of the fact that she lets me know when she is or isn’t physically feeling adventurous. Lupus is insanely hard to manage. As an outsider, I can’t see my grandma’s healthy tissue being destroyed or my roommate’s inflamed joints. But both have helped me realize that every aspect of one’s condition doesn’t have to be easily identifiable. We’re all so in need of visual evidence. We must learn to have more faith in what we simply cannot see.

Want to know the scientific definition of lupus? Check out the following site: http://www.lupus.org/answers/entry/what-is-lupus

902: Taking Up Too Much Space

I ran across a blog post by the usually cheerful Liz Henry that described how the nondisabled feel free to treat wheelchair users in public space. “This particular kind of bad behavior seems to me like it is unconscious but it reflects deep unwillingness to have people with disabilities in public at all or to consider us fully human. We are not considered citizens of the world. When we are in it we are always In the Way.” Read the whole thing: it’s sobering.

Preparing for disability

http://www.miamiherald.com/2013/09/27/3655358/disability-insurance-is-a-wise.html

As Shapiro points out in No Pity, everyone will eventually have some sort of disability, whether it is from an accident, genetic conditions, or simply old age. In order to prepare for this, a new innovation, namely disability insurance, might be the next most popular insurance product in the coming decades. After life insurance, car insurance, and home insurance, disability insurance seems like the next smartest move. This article, from the Miami Herald, points out that many people are under the false impression that social security will take care of them should they become disabled.

I think that disability insurance is a great and soon to be very important development. Though many people won’t be able to afford it at first, I think that through employer sponsoring and government aid, that it will be accessible. It is also a very supportive of disabled people and prevents stigma behind disabilities by letting the public know that disability will affect each person’s life at some point.  Also, new medical inventions that will come in the future will be extremely expensive. Disability insurance will help alleviate the financial burden of people that need the new/updated technology. Overall, I think disability insurance is a smart move and that more people should invest in this new product.

Disability Swag

Stumbled upon this the other day: custom prostheses. Scott Summit, founder of Besoke Innovations, creates artificial extremities that are both functional and aesthetic. His goal is to provide the disabled not just with state of the art equipment, but unorthodox designs that allow individuals the opportunity to personalize their prosthetic legs and express their own style. I find this innovation empowering. More “natural” looking prostheses  are almost an attempt to “hide” a condition, or help a person blend in with society. Summit’s company’s however, is equipping his clients with the means to confidently display their disabilities as a form of artistic expression and individuality.

Check out the website for a gallery of designs or more info about the company:

Senate Office Discrimination

Throughout my life I have worked with the ALS Association to fundraise, gain support, and lobby state and national congress.  ALS, also known as Lou Gehrig’s disease, attacks muscle control and does not affect brain function.  Steven Hawking is a testament to this, though his variation of the disease lets him live longer.  Whenever I went to lobby it wasn’t uncommon to go with some people with ALS.  These people had different types (where it attacks different regions first) and different levels of degeneration, from unsteady hands to loss of throat and leg control.

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Myths about Disability Fraud

A few months ago, public radio did a report on disability benefits in America. The reporter, Chana Joffe-Walt, argued that more and more poor and unemployed people who were not disabled and who should have been getting welfare from individual states were drawing Federal disability benefits. She gave the impression that anyone could get SSDI just by going before a judge and asking for it. Nobody from a disability advocacy group was interviewed, nor were any disability scholars or disability lawyers. The ADA and the fact that many disabled people are out of work because employers refuse accommodations, requiring for example that cashiers stand up all day, were not mentioned. The struggle of having repeatedly to prove to the Social Security Administration that, say, one still has MS in order to get benefits was ignored. The fact that a person has chronic back pain that makes them unable to do any of the jobs available in their region was framed as a case of unemployment but not disability. But the story gained enormous traction and is still circulating and being built upon, feeding into the myth that there’s an epidemic of fraud.

Here’s some rebuttals. Our friend s.e. smith collects a bunch of challenges to public radio’s claims in a link-rich post called “NPR Joins Liberal Attacks on Disabled People.” Media Matters, as ever, takes on conservative versions of the narrative in “Myths and Facts Behind the Campaign to Attack Disability Benefits.” The Columbia Journalism Review was not happy with the report’s use of selective and misleading data and linked to other critiques as well.

So although I think Tammy Duckworth did a great job with Castillo, I’m not sure about her “People like you are why disability benefits are in danger.” It seems to me that cheats and fraudsters, appalling as they are, aren’t chiefly to blame for the attacks on the idea of disability benefits. As we’ve seen in discussions on this blog, there’s plenty of people who just don’t want disabled people to exist; and there’s surely plenty more who aren’t necessarily hateful in that way but who don’t want disabled people to receive state support. And many who don’t care but like a sensational news story to spice up their lives. Sure, actual fakery is part of what makes people suspicious — but look at what one commenter on the s.e. smith post says about the atmosphere in the U.K.: propaganda and media campaigns may also be engines of unwarranted and harmful suspicion.

ETA: O SIXTY MINUTES NO (again, a nice collection of supporting links at the bottom)