Disability Futures

For many girls in the developed world, puberty is coming earlier than ever before, with studies showing that, on average, puberty is now starting for girls at around 10 years old - at least five years earlier than a century ago.

There are several explanations for this, but research is now revealing a worrying side effect of the trend - early puberty seems to also increase the risk of health problems later in life, such as increased rate of breast cancer, heart disease, and depression, as Julie Beck reported for The Atlantic this week.

In other words, the hormonal changes associated with triggering early maturation seem to impact women long after puberty ends in ways we're only now beginning to understand. But what's going on here from a scientific point of view?

Disability rights activist Nick Dupree died last weekend. Tomorrow would have been his 35th birthday.

Back in 2003, he told NPR: "I want a life. I just want a life. Like anyone else. Just like your life. Or anyone else's life."

He got that life.

Dupree had a severe neuromuscular disease and was living in Mobile, Ala. He was in a wheelchair and depended on a respirator to breathe. The state paid for nurses to come into his home — even take him to college classes. But that care was about to end the day he turned 21. He faced going to a nursing home, where he feared he would die.

Every state has a program that pays for care for severely disabled children to live at home, but not every state continues that care into adulthood. When Dupree was 19, he started Nick's Crusade — an online campaign to change the rules in Alabama.

Just a few days before his 21st birthday, he won. In 2008, he decided to move to New York City.

"I assisted him moving to New York, which was very, very scary for me," says Dupree's mother, Ruth Belasco. "But, I figured that his joy would outweigh my fear."

In New York, Dupree made friends. He went to museums. He could move just the tip of his thumb and his index finger. And if someone placed his hand on a computer track ball, he could draw. That's how he made online comic books that reflected his quirky humor.

Tucked among posh gated communities and meticulously landscaped shopping centers, Olympia High School in Orlando offers more than two dozen Advanced Placement courses, even more afterschool clubs, and an array of sports from bowling to water polo. U.S. News and World Reportranked it among the nation’s top 1,000 high schools last year. Big letters painted in brown on one campus building urge its more than 3,000 students to “Finish Strong.”

Olympia’s success in recent years, however, has been linked to another, quite different school 5 miles away. Last school year, 137 students assigned to Olympia instead attended Sunshine High, a charter alternative school run by a for-profit company. Sunshine stands a few doors down from a tobacco shop and a liquor store in a strip mall. It offers no sports teams and few extra-curricular activities.

Sunshine’s 455 students – more than 85 percent of whom are black or Hispanic – sit for four hours a day in front of computers with little or no live teaching. One former student said he was left to himself to goof off or cheat on tests by looking up answers on the internet. A current student said he was robbed near the strip mall’s parking lot, twice.

Sunshine takes in cast-offs from Olympia and other Orlando high schools in a mutually beneficial arrangement. Olympia keeps its graduation rate above 90 percent — and its rating an “A” under Florida’s all-important grading system for schools — partly by shipping its worst achievers to Sunshine. Sunshine collects enough school district money to cover costs and pay its management firm, Accelerated Learning Solutions (ALS), a more than $1.5 million-a-year “management fee,” 2015 financial records show – more than what the school spends on instruction.

In a perfect world, architecture would be accessible for everyone, but sadly, people with disabilities or mobility issues are often limited to the physical barriers found in typical constructions. Vermont-based firm LineSync Architecture wants to change that with a new brand of accessible architecture, starting with their wheelchair-friendly tiny house, the Wheel Pad.

The Wheel Pad is a prototype home for those who need more long-term adaptability from a home design. The 200-square-feet residence was designed in consultation with home health nurses, physicians, physical therapists and occupational therapists.

The Wheel Pad was designed with a number of features geared to a wide range of needs, such as fixtures installed at lower heights, double swing doors, and a Hoyer lift that slides on a ceiling track to provide mobility assistance. Like most tiny homes, the space is compact, however, large windows give the interior a nice, airy feel.

The home is also built on a mobile chassis base, which means it can be parked without a permit in most places around the US, allowing the inhabitants total freedom to travel. According to the architects, the design has a wide range of possible uses, “With Wheel Pad, we will change the way our injured soldiers and civilians come home from rehab. Wheel Pad is “disruptive” in the best sense of the word. It seems everyone has a use for Wheel Pad including: spinal cord injuries, people newly using wheelchairs or prosthetics, elderly veterans and civilians, hospice care, children with disabilities.”

Statement to the House Health ad Government Operations and Judiciary Committees

Re: House Bill 370—“End of Life Options Act”
Thursday, February 16, 2017

OPPOSE

Madam Chair, Delegates, and fellow citizens, I am here today to oppose House Bill 370, the “End of Life Options Act”.

My name is Sheryl Grossman. I have a very rare, genetic condition called Bloom’s Syndrome, so rare in fact that I am the 72nd case ever recorded worldwide, historywide.

Back in the olden days when I was diagnosed Dr’s didn’t know much and they advised my parents that I wouldn’t live past 2, maybe 4 (it got longer every yr—I’m 41 now and they just throw up their hands and shake their heads). My parents were told I wouldn’t walk, talk, or amount to much. They were told they should just put me away as they were young and could have other children. Clearly, Dr.’s don’t know everything.

This bill before you depends on Dr.’s stating that someone has 6 months, or less to live, a prognosis that pretty much everyone agrees is impossibly hard to accurately predict. As a disabled person, this bill scares me even more because I know the societal barriers (stigma and discrimination) that we face. Our lives are often seen as being worse quality of life and less worthy than others. Dr.’s whole profession sees us as broken and something to be fixed, but often we can’t be (and don’t want to) be fixed.

Why does this bill scare me given this statement, let me give you a personal example. Bloom’s Syndrome results in my being prone to multiple cancers. During my 7thcancer, a stage IV lymphoma that had metastasized to form a solid tumour in my liver, the head of Johns Hopkins Cancer Psychiatric Department entered my room during treatment, when I was barely conscious, barely able to speak. She said, “you know, you don’t have to do this anymore. You have been through so much. You can stop at any time you know, it is ok. We can simply turn off the machines, or we can increase your pain meds—you’re 37 lbs, it won’t take long”. I gave the last of my conscious energy to screaming NO and trying to get her out of my room. On her way out she said “I don’t understand why you want to live like this, in and out of hospitals for years.”

The answer is because I love my life. Sure, there have been plenty of times I have been bent over an emesis bowl when I didn’t feel that way, but this is my life and I am worthy of it! It has been 3 ½ years and 2 cancers and 1 chemotherapy regimen since then and here I am before you, a happy 41 year old.

Ladies and gentlemen, I fear that if this law were on the books then, I wouldn’t still be here today. It is far too easy to coerce someone into thinking themselves a burden to medical care staff, or family members. It is far too easy to make us think that our care is costing too much and draining those around us. This bill does not provide for a mental health evaluation before the prescription of lethal medications which takes away the only protection against this thinking.

Every faculty job advertisement at Holy Cross College at Notre Dame, Indiana, comes with this statement:

Physical Demands

Repetitive movement of hands and fingers — typing and/or writing; occasional standing, walking, stooping, kneeling or crouching; reaching with hands and arms; talking and hearing.

Ability to lift and carry up to 20 lbs.

NOTE: The above statements are intended to describe the general nature and level of work being performed by the person assigned to this job. They are not intended to be an exhaustive list of all responsibilities, duties, skills, and physical demands required of personnel so classified…. Holy Cross College is an equal opportunity employer. All employment decisions are based on qualifications and are made without regard to race, color, national origin, age, sex, disability, or any other legally protected status.

Holy Cross College seems like a nice, co-educational Catholic school in one of the great college towns in America. There’s no reason to think the school’s administrators are particularly ableist or interested in discriminating against people with disabilities. But Holy Cross—like dozens of other institutions of higher education across the country — keeps appending these clauses to job ads. Imagine if you were deaf or in a wheelchair and wanted to apply, then read that “walking, talking and hearing” were required. Would you even finish the application?

These job ads send a different message: “Be normal or you can’t have this job!”

President Obama’s Department of Justice (DOJ) had stated that proposed regulations for public accommodations websites would be issued in 2018—eight years after the agency began its rulemaking process.  The likelihood of such a proposed regulation being issued now is virtually non-existent.

Among the flurry of executive orders President Trump signed this week was one entitled “Reducing Regulation and Controlling Regulatory Costs”.  This EO virtually obliterates any chance that the DOJ will issue any website regulations for public accommodations websites during Trump’s Administration.

The EO directs all federal agencies to:

• Identify at least two existing regulations to be repealed for each new regulation;
• Ensure that the total incremental cost of all new regulations, including repealed regulations, to be finalized in 2017 be “no greater than zero;”
• Offset any new incremental costs associated with new regulations by eliminating existing costs associated with at least two prior regulations.

The EO exempts regulations relating to: (1) military, national security, or foreign affairs functions of the United States; and (2) agency organization, management, or personnel.  It also vests the Director of the Office of Management and Budget with the authority to grant additional exemptions.  The stated purpose of this EO is to “manage the costs associated with the governmental imposition of private expenditures required to comply with Federal regulations”.  We therefore assume that the EO would not apply to regulations applicable to state and local governments that the DOJ has been working on and could issue under Title II of the ADA.  It is unclear what, if any, impact this EO may have on the Title II regulatory effort.

We, as disability rights organizations, oppose the legalization of assisted suicide, which is a dangerous and harmful public policy.

We also support the continuation of the Affordable Care Act and everything it does to provide good health care to people with disabilities. Any degradation in health care will drive increased demand for assisted suicide.

Our reasons for opposing assisted suicide laws are many. When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for that “yes.” No psychological evaluation is required, putting depressed people in danger.

The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no witnesses are required at the death, so who would know? Many other pressures exist that can cause people with compromised health to hasten their death. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. We all already have the right to good pain relief, including palliative sedation if dying in pain.

Because the dangers and harms are so significant, many national disability and medical organizations oppose assisted suicide laws, and many legislatures have repeatedly rejected them.