Disability Futures

It’s Our Story is a national initiative to make disability history public and accessible. Scott Cooper recorded and collected over 1,300 video interviews from disability leaders across the country since 2005. Check out a video uploaded on June 20, 2010:

Charlie Carr of Boston, Massachusetts, speaks about acquiring his physical disability, living in an institution, and adopting a life of advocacy.

Charlie was partially paralyzed in a diving accident in his late teens; he went on to found the first Independent Living Center on the East Coast of the US and currently serves as Commissioner of the Massachusetts Rehabilitation Commission.

One cannot live without it. I am not a rock, not an island. My life is interconnected with dozens of others closely — and the rest of the world’s sentient beings — whenever I am out and about. Life without help is isolating, and helping hands grease the human experience, smoothing pathways, enabling, making all sorts of things possible that would not be otherwise.

Disabled people know this well, and gratitude is on our minds often when someone does the odd favor, gets us out of a jam, reaches that book on a high shelf. Help is handy, help is sublime, help is necessary.

Unless it is not desired.

And when it puts the grand spotlight of life squarely on your disability.

So this is the dicey part. I want to encourage altruism. I want it to flourish. It is an essential component of being human. Without it we descend into chaos and a brutal, self-centered way of life. But I am fond of my own sanity too, and the abbreviated but precious independence I have fiercely and relentlessly wrested from my post-accident life.

But I am proud that America’s ADA has sparked a worldwide recognition of the rights and needs of our planet’s more than 1 billion persons with disabilities.

The United Nations took the nondiscrimination principles of the ADA and incorporated them into a forward-reaching treaty, the Convention on the Rights of Persons with Disabilities. This convention has been ratified by 154 countries, but, sadly, not yet by the United States.

The United States Senate would be well-advised to take up this treaty and ratify it and allow the United States to maintain its worldwide leadership role on disability rights. We pioneered disability rights; it is time for us to share our expertise with all the nations of the world.

Despite this unfinished business, the ADA at 25 is more than just a good beginning; it’s a new day for persons with disabilities and a new day for our country.

The next day, Not Dead Yet sent our own letter to Secretary Burwell, emphasizing three points:

1)  Including “patients” among the stakeholders requires more than a token representation of the broad and diverse population of health care consumers. We are specifically concerned that people with disabilities and chronic health conditions are adequately represented in the process. While family members and disability-related professionals should also be included, such individuals and related organizations do not substitute for people with disabilities and the organizations that are run by us.

2)  It is essential that the initiative develop approaches that put individual patient self-determination as the top priority in establishing the value of health care treatments. PIPC rightly points out that a risk in alternative payment models based on “value” is that “value” may be defined in a “one size fits all” manner that does not recognize differences among patients . . ..   The urgency of avoiding this error cannot be overstated. If the bottom line is a system that determines value based on “majority rule”, that system will fail to meet the needs of individuals and will violate the core principles of self-determination.

3)  There is a risk that definitions of value that have previously been posited by self-appointed “bioethicists” will be foisted upon the stakeholders. Concepts such as “quality adjusted life years” and “disability adjusted life years” inherently devalue people with disabilities and chronic conditions and should not be used as a basis for the work of the initiative.

A blind mom and a paralyzed veteran are taking on Detroit Metro Airport. They say the airport isn’t just inconveniencing the disabled - it is putting them in danger.

The lawsuit that seemed to have been resolved was back in Detroit’s Federal Court Tuesday. The plaintiffs say Detroit Metro Airport isn’t living up to its end of a settlement agreement reached last fall.

One of the plaintiffs is Karla Hudson. 

She and her husband are blind, so when they travel with their young children they don’t drive. They, like many of the disabled rely on public transportation. 

Last fall, they say, it got a lot more difficult to fly out of Detroit Metro.

“Neurodiversity is an umbrella term referring to a group of neurological development disorders which share common features, in particular differences in how people learn and process information. Definitions vary, but here we use the term to refer to dyslexia, dyspraxia, dyscalculia, Attention Deficit Disorders (ADD/ADHD) and Autistic Spectrum (Autism / Asperger’s syndrome). Under the law these conditions are collectively known as ‘hidden disabilities’.”

Disclosure, I am an “out” dyslexic so I have a vested interest in moving the neuro diversity agenda forward.  Projections vary but anything between 1 in 20 and 1 in 5 of your members of staff may be on the neurodiverse spectra.

Why Appropriate The Term “Coming Out”?

Coming out may seem like a strange way to describe the process of telling your employer and colleagues about your hidden disability as the phrase is normally associated with people’s sexuality.

She,
In the dark,
Found light
Brighter than many ever see.
She,
Within herself,
Found loveliness,
Through the soul's own mastery.
And now the world receives
From her dower:
The message of the strength
Of inner power.

In Holland in 2016...

The Summer Institute on Theology and Disability brings together academics, theologians, practitioners and others—people with and without labeled disabilities—to explore the inclusive intersections of theology and disabilities. Founded in 2010, the Summer Institute is led by Bill Gaventa and a group of core faculty including Hans Reinders, John Swinton, Tom Reynolds, Amos Yong, Erik Carter, Darla Schumm and Julia Watts Belser. Presented by Bethesda, this international and increasingly multi-faith annual event creates a significant space for thought-and-practice leadership in the growing arena of theology and disability.

The 2015 Summer Institute on Theology and Disability will be in Atlanta, May 26-29, hosted by The Center for Leadership in Disability, School of Public Health, Georgia State University.

Save the Date

The 2016 Summer Institute on Theology and Disability will be hosted by Western Theological Seminary and Hope College in Holland, Michigan, May 23-26.

Fear mongering has long been a major tactic used in advertisements and public service announcements. It grabs the attention of viewers, gives them pause, and maybe even pushes them to take action. A new campaign about osteoporosis prevention uses this approach, claiming that a hideous fate is destined to befall any person who dares not immediately take better care of their bones.

What, exactly, is the hideous fate at stake? Using a wheelchair. Apparently, needing to use a wheelchair is the ultimate tragedy. "Beware the Chair," warns the PSA. It's catchy. It stays with you in a way that's haunting and unsettling. The problem is that as a wheelchair user, the PSA has me on edge for a much different reason than its intent. I'm not frightened by the prospect of osteoporosis. I'm frightened by the fact that wheelchairs are portrayed as an object of doom.

The ad shows a manual wheelchair being rigged to move via remote control, and then set loose in public while empty to chase people down. Combined with creepy horror movie music, the visual of an empty wheelchair moving on its own is meant to somehow convey the risks of osteoporosis.

This PSA takes the very serious matter of osteoporosis and turns it into a sideshow. I understand the intention behind the campaign is positive, but it is neither well thought out nor well executed. The ridiculous prank of being chased by empty wheelchairs might be memorable, but it does absolutely nothing to effectively educate the public. There are barely any facts included in the video, so it becomes all about the fear of wheelchairs, and on a larger scale, of disability.