Disability Futures

The affordable housing crisis has spared no county—rural or urban. From small towns like Traverse City, Michigan, to big expensive cities like San Francisco, a cheap and decent place to live is hard to come by. And it would be even harder without government support, according to a new report by the Urban Institute.

Nationwide, only 21 units are available per 100 extremely low-income renter households (those earning below 30 percent of the area median income) without government assistance. With assistance, it’s 46.

UI has also created a neat interactive map, which is an update from a previous version. It lets users explore the gap between the demand and supply of affordable units in every single U.S. county. (The National Low Income Housing Coalition released a similar report for states and metros this year, based 2015 one-year American Community Survey data. The UI report is based on 2010-2014 five-year estimates, which is better for a county-level analysis.) The UI map also lets users toggle the impact of assistance from the Department of Housing and Urban Development (HUD) and the Department of Agriculture (USDA).

I have Ehlers-Danlos Syndrome (EDS), a congenital connective tissue disorder in which the body makes collagen, its glue, incorrectly. Because collagen is everywhere, EDS can plunder every bodily system, yet it’s one of countless diagnoses often experienced as “invisible.” Invisible or sometimes-invisible conditions can be as diverse as multiple sclerosis, epilepsy, mental illnesses, developmental disabilities, HIV/AIDS, asthma, arthritis, diabetes, autoimmune and gastrointestinal diseases, cancer, and more. In fact, by some estimates, up to 96 percent of chronic conditions are invisible, at least for some periods of time. They are not accompanied by an external signifier like a wheelchair, limp, brace, or any other form of announcement.

Given the tricky situations that can arise when we have to take care of ourselves in the face of stereotypes about what disability is “supposed” to be, many people with invisible or sometimes-invisible conditions spend inordinate amounts of energy pretending to be fine. For instance, my old workplace once hung a sign next to the automatic door button: For use only by the disabled. I’d been trying to overcome painful impingements in both shoulders due to joint hypermobility, and could practically hear my lovely physical therapist’s voice in my head imploring me to press the button instead of prying open the heavy door. But every time I saw the sign, I hesitated, and eventually stopped using the automatic door altogether out of fear being judged or having to explain myself. I actively chose conservation of my mental energy over my physical needs.

Similar situations arise with handicap bathrooms, parking spaces, and public transportation seats, where people with a huge range of disabilities might choose to self-police instead of risk being policed by others. These moments which seem so quiet and personal — someone with a seizure disorder not taking the handicap seat, someone with Crohn’s Disease waiting for the regular bathroom, someone with fibromyalgia taking the stairs instead of the elevator — are indicators of a mass psychology in which the oppressed and downtrodden are not, by default, taken care of. They learn to neglect themselves on others’ behalves.

The Amtrak station in Mobile, Alabama closed in 2005, after Hurricane Katrina flooded it. The storm wiped out passenger rail service across the Gulf Coast region, closing stations between Florida and Louisiana. Mobile’s waterlogged station was razed in 2007.

The loss of the Gulf Coast service left Mobile residents who don’t drive with fewer transportation options. While there’s an airport within a half-hour’s drive, it’s quite expensive to fly out of the city: A flight from Mobile to Orlando can cost up to $500. Meanwhile, bus lines have decreased service, too, due to budget problems.

But in recent years, there have been signs of life for restored rail service.

Now, that progress is in doubt. In his federal budget blueprint released in March, President Trump has proposed major funding cuts for Amtrak, forcing service disruptions that would be felt everywhere from rural towns to mid-sized and big cities. In total, nixing federal funding for Amtrak’s long-distance routes would cut rail service in 220 cities across 23 states, eliminating a mode of transit used by 144.6 million travelers a year, according to the NARP. Amtrak received $1.385 billion in federal funds in 2016.

If Trump has his way with the federal budget, it will spell certain doom for Mobile’s plans for a new Amtrak station. Some of the funds are safe despite any proposed federal cuts, because they were previously earmarked. However, “if the long distance network was shut down, the new station wouldn't be used anyways. Our long-term goal is travel between New Orleans and Orlando,” Ross explains.

driving isn’t an option for many Amtrak customers, according to Mathews. “Roughly 25 percent of Amtrak passengers are elderly” and can’t or don’t like to drive, he says. The loss of passenger rail will leave residents of rural towns without options if they want to visit family or receive medical care out of town. For some small towns, losing Amtrak service would render them “completely cut off from the world,” Mathews says.

It’s now up to Congress to decide what happens with Amtrak funding, and the clock is ticking. A short-term funding bill will likely avoid a government shutdown this week, but what ultimately happens in the final budget is still uncertain. Mathews says that hundreds of NARP members have been calling and writing their representatives to express concerns over a loss of passenger rail service.

Using an approach first developed for studying infant language learning, the team of neuroscientists led by Dr Yuki Kikuchi and Prof Chris Petkov of Newcastle University had humans and monkeys listen to sequences of spoken words from a made-up language. Both species were able to learn the predictive relationships between the spoken sounds in the sequences.

Neural responses from the auditory cortex in the two species revealed how populations of neurons responded to the speech sounds and to the learned predictive relationships between the sounds. The neural responses were found to be remarkably similar in both species, suggesting that the way the human auditory cortex responds to speech harnesses evolutionarily conserved mechanisms, rather than those that have uniquely specialized in humans for speech or language.

"Being able to predict events is vital for so much of what we do every day," Professor Petkov notes. "Now that we know humans and monkeys share the ability to predict speech we can apply this knowledge to take forward research to improve our understanding of the human brain."

Lainey Feingold: When I try to introduce you to people who don’t know you or I tell someone “oh I have this friend Josh Miele” I always feel like I’m missing something in the description of who you are because, you know just on the work side there’s so many different things you do. Do I say you’re a scientist, or do I say you’re a researcher, an inventor, an investigator, so how do you think of yourself?  How do you describe what you do?

[Music, big band swing]

Joshua Miele: What I have engaged with for my entire professional life really is figuring out how to give blind people, myself included obviously because I’m blind, but how to make information available that is necessary to do the things that we want to do.

You know I remember seeing the Red Balloon in second grade.  To this day I think it’s the dumbest movie ever, right?  But that’s because I’m blind and the only thing I heard through the entire video movie was “balloon, balloon” and it’s like that’s the only line in the whole damn movie.

Acute shortages of home health aides and nursing assistants are cropping up across the country, threatening care for people with serious disabilities and vulnerable older adults.

In Wisconsin, nursing homes have denied admission to thousands of patients over the past year because they lack essential staff, according to associations of facilities that provide long-term care.

In New York, patients in rural areas have been injured, soiled themselves and gone without meals because paid caregivers aren’t available, according to testimony provided to state legislators in February.

In Illinois, the independence of people with severe developmental disabilities is being compromised as agencies experience severe staff shortages, according to a court monitor overseeing a federal consent decree.

The emerging crisis is driven by low wages — around $10 an hour, mostly funded by state Medicaid programs — and a shrinking pool of workers willing to perform this physically and emotionally demanding work: helping people get into and out of bed, go to the bathroom, shower, eat and participate in routine activities, often while dealing with challenging behaviors.

Experts warn that this labor problem portends even worse difficulties as America’s senior population swells to 88 million people in 2050, up from 48 million today, and requires more assistance with chronic health conditions and disabilities.

“If we don’t turn this around, things are only going to get worse,” said David Gifford, senior vice president of quality and regulatory affairs for the American Health Care Association, which represents nursing homes.

“For me as a parent, the instability of this system is terrifying,” said Cheryl Dougan of Bethlehem, Pa., whose profoundly disabled son, Renzo, suffered cardiac arrest nearly 19 years ago at age 14 and receives round-the-clock care from paid caregivers.

“We’ve gone through hundreds of . . . workers, and there have been times I’ve found Renzo sitting in a recliner, soaking wet, because his diapers hadn’t been changed. And at times I wasn’t sure if he was being fed well or treated well,” Dougan continued. “It’s exhausting, mentally and physically. You live with a constant sense of crisis.”

A Virginia Tech economics researcher says the popular social media website – and its open sharing of information – is a vital and often a significant tool against government corruption in countries where press freedom is curbed or banned.

In new research recently published in the journal Information Economics and Policy, Sudipta Sarangi of the Virginia Tech Department of Economics said his cross-country analysis using data from more than 150 countries shows the more Facebook penetrates public usage, the higher the likelihood of government corruption meeting protest. In short, Sarangi said social media serves as peer of the press.

For me, autism means that my mind is a vast open space where all my knowledge runs free with my hyper-connected brain.

Not seeing borders can manifest itself in difficulties understanding boundaries, and this has been prominent throughout my life beginning at an early age. For instance, I never knew how far to stand from people. To cope, I would stand a little farther away than what I thought was acceptable just to be sure. But not all coping mechanisms and assumed boundaries are perfect – my method failed me once when I was in kindergarten.

My mind’s boundaries followed me outside of school too. One day, I was filing out a form one day and the woman working at the front of the office seemed puzzled. She commented, “You’re the first person ever to start filling out the form at the bottom and working your way up. Why did you do it that way?” I explained that I wanted to get the meatier parts out of the way first so that towards the end of filling out the sheet, my mind can rest as the name/address/date of birth part is a no-brainer.