Disability Futures

I am also legally blind—autism is often linked with vision or hearing problems—so I can’t perform very well in cold readings. If given a few days before an audition, I always memorize sides so I don’t read them off the page. I enlarge scripts so they are twice as big, just like all of my textbooks and tests were enlarged in school. I will often secretly record the first read-through of a play on my cell phone, hidden in my pocket, so that I can learn my lines and study the script by listening; my eyes give out after about 15 minutes of looking at a page. But because I know this, I get off book damn fast. Often before the first rehearsal.

It’s really no different. They’re lines I’ve learned, that I say often, but I’m making you believe they are mine, particular to this specific moment.

As people age, their needs change, too. Some renovations help meet those needs. If senior citizens have resided in their homes for a long period of time, renovations will be necessary no matter how well maintenance has been performed.

Although grants and other forms of financial assistance can ease the economic burden of home renovation, they may not cover all project costs.

By some metrics, all of them.

When Kenneth Williams was a child, his father beat him regularly with a belt. One time, he threw Williams against a wall, injuring his brain. Besides the trauma stemming from this abuse, Williams was also forced to witness similar violence against his mother and siblings. In school, Williams was diagnosed with severe learning disabilities, perhaps related to the brain injury, or from exposure to toxic chemicals and drugs. Although three experts examined Williams and determined that he met the criteria for the definition of intellectual disability, which should have protected him, the Supreme Court declined to stop his execution. He died on April 27th.

Williams was the fourth person executed by the state of Arkansas this April. Arkansas Governor Asa Hutchinson had signed the warrants of execution as he rushed to use up the state's supply of lethal-injection drugs before they expired. All four of the executed men were disabled. Jack Jones was wheeled into the execution chamber because one of his legs had been amputated owing to diabetes. He also had bipolar disorder. Marcel Williams had been exposed to extreme trauma as a child, including repeated rape, and had intense post-traumatic stress disorder. Ledell Leehad fetal alcohol syndrome resulting in intellectual disability. Lee might also have been innocent.

Radium’s luminosity was part of its allure, and the dial painters soon became known as the "ghost girls" — because by the time they finished their shifts, they themselves would glow in the dark. They made the most of the perk, wearing their good dresses to the plant so they’d shine in the dance halls at night, and even painting radium onto their teeth for a smile that would knock their suitors dead.

Grace and her colleagues obediently followed the technique they’d been taught for the painstaking handiwork of painting the tiny dials, some of which were only 3.5 centimeters wide. The girls were instructed to slip their paintbrushes between their lips to make a fine point — a practice called lip-pointing, or a "lip, dip, paint routine," as playwright Melanie Marnich later described it. Every time the girls raised the brushes to their mouths, they swallowed a little of the glowing green paint.

Ever since the glowing element had been discovered, it had been known to cause harm; Marie Curie herself had suffered radiation burns from handling it. People had died of radium poisoning before the first dial painter ever picked up her brush. That was why the men at the radium companies wore lead aprons in their laboratories and handled the radium with ivory-tipped tongs. Yet the dial painters were not afforded such protection, or even warned it might be necessary.

That was because, at that time, a small amount of radium — such as the girls were handling — was believed to be beneficial to health: People drank radium water as a tonic, and one could buy cosmetics, butter, milk, and toothpaste laced with the wonder element. Newspapers reported its use would "add years to our lives!"

But that belief was founded upon research conducted by the very same radium firms who had built their lucrative industry around it. They ignored all the danger signs; when asked, managers told the girls the substance would put roses in their cheeks.

We all know that the human brain is ridiculously large, but how many of us realise that it’s lopsided as well? It turns out that the cockeyed shape of our brains is as important to understanding human evolution as its size is.

The brain’s lopsidedness is most evident through our hand preferences. Roughly nine out of every ten people are right handed. Lefties are indeed a rarity. And these figures hold across all human populations and cultures showing that it’s a universal pattern for Homo sapiens, being genetically hardwired.

Below the surface, these statistics about right versus left handedness reveal something rather peculiar about human brains: the left hemisphere generally dominates over the right when it comes to controlling the movements of the hands. And this hemispheric dominance – or asymmetry – is unique.

Similar patterns can be seen for the language areas of the brain as well. Regions on the left side such as Broca’s Area – which play a vital role in language production and comprehension – are disproportionately enlarged, lopsided even, compared with their right side equivalents.

In fact, Broca’s Area is six times larger than the same region on the right side of the brain when compared with a chimpanzee’s noggin. That’s twice as large as you’d expect based on our threefold larger brains.

Another way the human brain is lopsided is the misalignment or even skewness between the left and right hemispheres themselves, a feature called petalias. When seen from above, the front most part of the right hemisphere juts further forward than the left. And the opposite configuration is seen on the left side, where the rear of the left hemisphere projects further back then the right.

A similar pattern is seen in the brains of other apes and even some monkeys, but it’s nowhere near as striking as in the human brain. And petalias are also seen in the arrangements of the blood vessels that supply and drain the brain and can even be observed on a microscopic level.

What role do petalia’s play? Well again they seem to be a part of the overall asymmetry of the human brain, whereby functions are relegated to a particular side, much like we see with hand control or language.

If our cockeyed brains are so unique, then why did they evolve to be this way?

The ADAPT Community is gravely concerned by the House of Representatives’ ill-considered passage of the American Health Care Act (AHCA). The legislation, which received significant amendments only days before the vote, has serious problems which House Republicans – in their haste to pass something and declare victory – have refused to address.

This legislation – if it were to pass the Senate and become law – will have a truly devastating impact on seniors and people with disabilities.  It will:

– Destroy the insurance protections for individuals with pre-existing conditions that allow them to receive necessary healthcare services;

– Undercut access to vital Medicaid healthcare as well as long-term services and supports (LTSS) needed by older and disabled Americans; and

– Eliminate the incentive to provide community-based services to disabled Americans established in the Community First Choice Option.

Eliminating Protections for People with Pre-existing Conditions

Although recent changes to the legislation secured the support of moderate Republicans, those changes do little, if anything, to mitigate the dangerous impact of this legislation, particularly on people with pre-existing conditions.  Insurance companies will be able to charge exorbitant premiums to disabled and elderly individuals leaving these individuals without healthcare.

Cutting Medicaid Funding Needed to Support Elderly and Disabled Americans

As written, the legislation will cut more than $830 billion from the Medicaid program, forcing states to choose between raising state taxes and cutting healthcare services for poor children, the disabled and seniors.  These cuts couldn’t come at a worse time.  As our population continues to age, more and more people will rely on Medicaid to cover vital long-term services and supports, further straining state resources.  States will reduce Medicaid benefits, impose waiting lists, implement unaffordable financial obligations, or otherwise restrict access to needed assistance.  Without adequate support in the community, families will be forced to place their loved ones in nursing facilities and other institutions, only increasing the strain on already-limited Medicaid resources.

Eliminating Federal Incentives Designed to Promote Community Integration

For elderly and disabled Americans who rely on it, Medicaid is not just a health insurance program: it literally supports their lives and their liberty.  Outside of the Disability Community, there has been virtually no public discussion about how the AHCA eliminates the enhanced Federal funding associated with the Community First Choice Option (CFCO).  CFCO was the result of nearly a quarter century of work by ADAPT and other disability rights advocates.  This Medicaid option provides additional funding to states that provide LTSS in the community to people who would otherwise be placed in a nursing facility or institution.

Kirby Hough no longer needs to add an extra 30-minute window for her daily commute to and from work.

Nor does she need to schedule rides at least 24 hours in advance when she wants to go somewhere. Or have single dollar bills on hand because drivers only accept exact payment.

Hough, who has visual impairment, has been using a new Uber-like ride-hailing service offered by the Kansas City Area Transportation Authority for about a month.

“It’s made it a lot easier,” she said.

Now, KCATA is rolling out the app-based public transit service called RideKC Freedom On-Demand to the general public.

The one-year pilot project enables riders to use a cellphone app to hail taxis. While the core of the service was built with the mobility of people with disabilities in mind, it is open to the general public to use, too.

KCATA is offering the new service through a partnership with Transdev and will use taxis from 10/10 Taxi, Yellow Cab Co. and zTrip.

“This is a big deal,” said Robbie Makinen, president and chief executive of KCATA. “If we can get all the kinks out of it, with the help of our citizens, it will change the face of paratransit services.”

The beautiful part of the private-public partnership is that KCATA receives a portion of the fare paid by the general public, which drives down the cost to provide the service to those with disabilities, Makinen said.

While House Republicans lined up votes Wednesday for a Thursday showdown over their bill to repeal the Affordable Care Act, Vickie Glenn sat in her Murphysboro, Ill., office and prayed for it to fail.

I wish I had happier news to share. Over the weekend, Congress came to an agreement that will fund the government through September, and it does not include funding for Assets for Independence (AFI), the federal program that has, since 1998, been the largest source of funding for Individual Development Accounts. Simply put, AFI has been “zeroed out.”
Together, we fought long and hard to defend AFI over the past year, and you responded to our calls to action time and time again:

• Last June, when we first heard AFI was defunded in the Senate funding bill, you stepped up. Thanks to you, funding was restored in the House version of the bill.
• In September, an army of asset builders descended on Capitol Hill and asked Congress to fund AFI in more than 500 separate Hill meetings.
• Last fall and again earlier this year, you answered our call to sign onto a letter to key members of Congress in support of AFI.
• This spring, a number of you contacted key members in a final, targeted push for FY17 support.

In the end, though, the deck was stacked against us. Ultimately, the bill that funds AFI was cut by more than $900 million; legislators were looking to reduce spending everywhere they could, and despite its long history of bipartisan support, AFI was one of the unfortunate targets.

Like many of you, I’m deeply saddened by today’s news. For nearly 20 years, AFI has been a central element of the asset-building landscape. Many of us have had the honor of witnessing firsthand the dedication and determination of the savers AFI has supported – and the incredible transformation of their lives. This is a disheartening loss of opportunity.