Personal Assistant: Seeing the Person, Not Just the Needs

wheelchair on beach with people in water

I recently stumbled upon a wonderful blogpost titled Letter To A Personal Assistant. The writer is a woman with cerebral palsy, and she discusses how she trains the people who help her with activities of daily living to remember to see her as the person she is.

What she’s asking is something that, I sometimes fear, is in short supply — the ability to see things from another person’s perspective. We have trouble doing this in our conversations, our workplaces, in our families, and certainly in our politics.

But when one becomes dependent on another person’s ability to perceive, empathize, and even be curious enough to care — well, the thought is frightening.

As I read Kathleen’s letter, it reminded me of my own instructions detailed on my Advanced Healthcare Directive. I currently don’t have disabilities, but I imagined a time when I might. If I can hear, I don’t want to get stuck in a room with a television blaring FOX News, so I listed all the podcasts and music I love. I suggested getting me an iPad, etc. You get the idea. I tried to think for someone who might want to help, but not really know how.

I hope you’ll give Kathleen’s blogpost — and the entire blog — a read. It was written for a reason, and needs to be heard and shared.

Self-Driving Cars Should Be Designed For People with Disabilities

woman using wheelchair

Self-driving cars should be designed at the outset for people with disabilities. “Transportation is probably one of the top three barriers that people who are blind face—being able to get anywhere and do it independently,” said Kim Charlson, who usually uses ridesharing services when she needs to get around. “We think that when [autonomous vehicles] are at a point when they can be deployed safely for everyone, there should be a way—there has to be a way—for blind people to use them as well.”

Read this article by BRET HAUFF

Leveraging Trust in Nonprofits

Trust is a beautiful thing. The nonprofits showcased so brilliantly by Jimmy Kimmel should be proud. In one sentence, he said: You are credible, trusted, and known. We should follow your leadership.

But of course, if your nonprofit doesn’t take a stand, isn’t credible, or isn’t trustworthy, he can’t say that.

As the world offers more public platforms for communication, those who are masters of communicating have more power to reach people and frame issues so they can be understood. And I’m not just referring to celebrities.

Nonprofits have power because they are trusted. But only if they choose to use that power, that is. If they truly advocate for those they serve by communicating their needs.

This was Kimmel’s Part III. Here are Parts I and II.

Disrupting Nonprofits

Well, why not disrupt nonprofits?

Every once in a while, I come across something that makes me sit back on my heels and think. These guys did it through the power of video storytelling. They led me to their Facebook page and then to their website where I was blown away again by the idea behind their business. I’ve never seen anything quite like it.

They are fundraising for medical research to prevent/cure/alleviate diseases that cause retinal degeneration.

Make you think of a foundation with presentations by research scientists with audiences of wealthy grey-haired supporters (not that there’s anything wrong with that)?

No, these guys are designing and selling good looking clothing. Retail. 100% of the profits go to fund research. The story of the way the clothing is designed teaches people about blindness.

They guys themselves have Stargart disease, a form of juvenile macular degeneration. They not only model their clothing when they wear it, they are role models for other people who are blind or visually impaired who are thinking about becoming entrepreneurs. They are young, friendly, funny, articulate, master storytellers and excellent marketers. They have attracted celebrities like Ellen Degeneres and Richard Branson.

They are actually more of a media company — using stories to generate followers who want to be part of their brand/tribe — using stories to raise awareness and understanding about blindness. Sharing stories on TV, YouTube, Facebook, live presentations — you name it.

Flipping everything on its head: cause-related marketing, fundraising…

Leading the charge.

I say, “Onward!”

I say to you, “Check ’em out!”

The Hidden Costs of Disabilities

People living with disabilities have extra costs of living that others do not have. They have higher medical expenses and may need personal assistance or assistive devices, such as wheelchairs or hearing aids. They may need to spend more on transportation or modified housing, or be restricted in what neighborhoods they can live in to be closer to work or accessible services.

How can we make sure their needs are met? Read: The Hidden Extra Costs of Living with a Disability

Disability vs. Impairment

Most people aren’t aware of the term “ablism” and don’t realize what life is like from the perspective of someone who has a physical impairment. Patty Berne and Stacey Milbern have an interesting conversation about the difference between having an “impairment” (physical) and a disability (societal). When provided with accessibility (universal design, adaptive devices, elimination of misperceptions and other barriers to opportunity), everything changes. A society that makes these changes in its systems shows it values the contributions of all of its members.

This video is part of the series No Body is Disposable, produced by Sins Invalid and the Barnard Center for Research on Women. Video by Dean Spade and Hope Dector. Learn more about the series at http://bit.ly/nobodyisdisposable

Equal Access to Information: Facebook

Meet the Blind Engineer who is Helping the Visually Impaired “See” Photos on Facebook.

I’ve written before about Facebook’s attention to accessibility for people with disabilities. Here, once again, I’d like to give them a shout out for their work in creating technology that will audibly describe photos for people with visual impairments.

This initiative is good business. Through it, I believe Facebook understands the importance of inclusion. They’re not going to leave a huge portion of the population behind a wall, unable to fully participate in the conversation and community. They hire talented people who have disabilities and the natural motivation to perform the rigorous testing needed. These people are automatic ambassadors, sharing the news through word of mouth.

Soon this technology will be perfected and copied into other products. Soon we will take it for granted. Eventually, people with vision will derive benefit from this technology, and we will probably forget the reason why it was developed, and who played an important role.

But in addition to learning about “the technology,” we should also pay attention to what happens when a company listens and seeks to address a real need. We should pay attention to the benefit of having people who are actually experiencing the need be part of the solution. They add experience, expertise, perspective, urgency, and purpose to the task at hand.

Kudos to Facebook, and to the people who are working to break down the walls of accessibility, and encourage community and opportunity.

Nonprofits Should Help Get Out the Vote!

Many nonprofits have social missions of education, service, and social uplift. Encouraging voting and other forms of participation should be a natural part of every nonprofit’s mission.

According to the National Center for Charitable Statistics, there are more than one million registered 501(c)(3) nonprofit organizations that employ over 13.5 million people, rely on 61 million volunteers, and serve and engage millions more.

Nonprofits represent democracy’s highest ideals of public service, active citizenship and commitment to a better society. With their natural engagement assets and unparalleled reach, nonprofits are particularly well suited to encourage voter participation. And they have a proven impact on participation when they do.

Nonprofits have access to communities that are typically underrepresented in the political process. They are trusted messengers. At the heart of that trust is nonpartisanship. However, nonpartisanship does not mean nonparticipation.

Voters contacted in-person by nonprofits during services voted at higher rates than other voters in their state across all demographics.

Learn more at: http://www.nonprofitvote.org/

Re-Framing Disability

People see disability always as a diminished form of normalcy or a form of normalcy that has to have this pathos around it. But a disabled person’s experience is as complicated as any given life. It’s got heartbreak, sadness, joy, and frustration, and every possibility and experience in it.

If you see that, then you see the invention and creativity that comes from looking at people with nonnormative experiences. If you can just strip away this freighted cultural baggage, you can get interested in what people do. The body is adaptive—that’s what we know—in every life cycle and form, always. That’s exciting to me.

A fascinating read about designer-activist Sara Hendren: https://www.guernicamag.com/sara-hendren-the-body-adaptive/?platform=hootsuite

Glasses for the Blind?

In this photo taken Thursday, Feb. 2, 2017, Yvonne Felix wears eSight electronic glasses and looks around Union Square during a visit to San Francisco. The glasses enable the legally blind to see. Felix was diagnosed with Stargardt’s disease after being hit by a car at the age of seven. (AP Photo/Eric Risberg)(Credit: AP)

Gaming technology has uses beyond virtual reality — by making sight real for people who are legally blind. People with peripheral vision may now be able to see clearly again!

Read more: http://www.salon.com/2017/02/25/sharp-vision-new-glasses-help-the-legally-blind-see/

I’m Speechless!

Nonprofits that advocate on behalf of people with disabilities struggle with changing the public’s misperceptions. The TV show Speechless seems to have found an answer. The show is funny, super smart, and engaging, but that’s not all. It nails so many misperceptions and sacred cows per episode, it’s truly hard to keep up. THIS IS THE WAY TO DO IT! WAY TO GO, ABC!

http://abc.go.com/shows/speechless

Crossing the Political Line for People with Disabilities

Most nonprofits try to stay out of politics so they don’t upset their donors. But when an organization states it advocates on behalf of people with disabilities, and has nothing to show for it, playing it safe through inaction may come back to haunt it. A recent article in the Seattle Post Intelligencer brings awareness to one such issue:

A U.S. Department of Education website, empowering families of students with disabilities, has disappeared — and already embattled Trump education chief Betsy DeVos may be to blame.

U.S. Sens. Patty Murray and Maria Cantwell want to know what happened to the vanished website, and have asked Education Secretary DeVos to put it back up.

The resource has been inexplicably taken away. In a letter to DeVos — whose confirmation both senators vocally opposed — Cantwell and Murray explained:

“We are deeply concerned that prior to your confirmation and arrival at the Department, the centralized resource website for the IDEA became inaccessible to the public for more than a week, and is now redirecting people to a site for the Office of Special Education Programs.

The new website “lacks much of the information previously available,” the senators wrote.

“The Department’s failure to keep this critical resource operational makes it harder for parents, educators and administrators to find the resources they need to implement this federal law and protect the rights of children with disabilities,” the senators told DeVos.

Is this a signal for things to come? Will nonprofits who advocate on behalf of people with disabilities rally supporters? Time — and leadership — will tell.

Read the full story here.

Photo of Senator Patty Murray D-Wash by Sy Bean, seattlepi.com

Driverless Cars for People with Disabilities

The potential of driverless vehicles to liberate Americans with disabilities from transportation issues, bring more people into the workforce, and save substantially on health care, is vast. By engaging with government and private industry to make sure that tech firms and carmakers address the needs of drivers with disabilities, new transportation options can be designed that would create 2 million more job opportunities and save $19 billion annually in health care costs…

Read all about it:

http://home.bt.com/tech-gadgets/tech-news/a-single-autonomous-car-journey-with-a-blind-man-convinced-google-to-launch-driverless-cars-11364121441254

http://www.curbed.com/2017/1/18/14309082/driverless-cars-disabled-transportation-access

The Soft Exoskeleton of the Future

One of the biggest problems for people with disabilities is the cost of producing specialized devices for a small market: such as clunky, heavy motorized wheelchairs.

But when there are multiple uses for something (a wider market), there’s a better possibility it will be produced at a lower price and higher quality.

Researchers are working on making a soft exoskeleton that is lightweight, cost-effective, and efficient. It will have uses, not only for people with disabilities, but also for the military and industry. The larger market will mean faster development. And that is good news for seniors and people with disabilities who could benefit from the devices.

The creators got there by asking the right questions. What questions are you asking when you attempt to address problems?

She’s Taking a Stand

Mia Ives-Rublee competes in the Working Wounded Games photo by MIKE CADOTTE

The photo above is of Mia Ives-Rublee as she competes in the Working Wounded Games. She’s taking a stand for disability rights. “I’m 37, my whole life I’ve benefited from disability rights,”she said. “Only forty years ago they didn’t exist like they do now. I know there’s the risk of turning back the tides to when we didn’t have disability rights. No way am I going to sit back and watch that happen.”

Google is Helping to Make the World Accessible

google

Here’s a story of interest for nonprofits and causes trying to improve the quality of life through inclusion:

‘Google’s mission is to organize the world’s information and make it universally accessible and useful,’ the company boasts. Rio Akasaka says he wants to make sure that ‘even those with access needs’ benefit from this.

By day, Akasaka is a product manager on Google Drive, the cloud file-hosting service. But in his ‘20% time,’ the Boulder, Colorado resident is a product manager working on accessibility features for Google Maps. [The project maps accessibility of buildings for people using wheelchairs.]

The feature won’t just help people in wheelchairs, either. The product manager cites parents with prams, or people reliant on canes, as people who will benefit from more information about a building’s facilities.

Photo: Google; Article: Business Insider