Disability Futures

It’s important for people to learn about living with disabilities and the challenges that they can bring, but it can be a boring subject to explain. While procrastinating on YouTube, I came across these three individuals who make videos about their disabilities, though none were actually born with them.

Through their vlogs, they explain their conditions in ways that aren’t overly educational. Besides using entertainment to educate viewers, they also try to normalize disabilities and spread awareness about the various challenges they face. No matter what the condition is, a good portion of the disabled community benefits from people using social media for this purpose. So, here are three great YouTubers with disabilities who are well worth your time.

Drew Lynch

Molly Burke

When she was four years old, Burke was diagnosed with retinitis pigmentosa, a rare genetic disorder that involves retina cells breaking down, and she slowly lost her sight throughout her childhood until going completely blind at age fourteen. You may have seen her in a recent Dove commercial for a new body wash. She posts videos about her blindness, but she also uploads plenty of challenge videos, such as ones in which she guesses the colors of scented markers.

Zach Anner

U.S. Congressmen Mac Thornberry (R-Clarendon) and Rick Larsen (D-Everett) introduced “The Rural Veterans Travel Enhancement Act,” H.R. 3720, to assist veterans in rural areas get to and from their medical appointments. 

“One of the primary responsibilities of the federal government is to support the men and women who serve our country,” said Thornberry, Chairman of the House Armed Services Committee. “These men and women have put their lives on the line for our everyday freedoms.  We will never truly repay them for their sacrifices, but programs and legislation like this measure are important to better serve our veterans’ needs.”

This Act will help veterans living in rural areas with transportation services and reimbursement for their travel to VA medical facilities.  Not only do these initiatives ease the burden for veterans traveling lengthy distances for care, but they have proven to save taxpayer dollars and reduce the number of missed medical appointments at VA.  

The Rural Veterans Transportation Enhancement Act will:

• Expand a pilot program that reimburses veterans and eligible beneficiaries for travelling to Vet Centers for mental health care and counseling.
• Make the Veterans Transportation Service program, which allows local VA facilities to hire drivers and purchase vehicles to transport veterans to their appointments, permanent.
• Extend a grant that allows Veterans Service Organizations and State Veterans Service Agencies to explore new approaches to provide transportation or travel assistance.
• Expedite the certification process for volunteer drivers serving veterans through the Veterans Transportation Service program.

Superfest International Disability Film Festival is the longest running disability film festival in the world. Co-hosted by San Francisco’s Lighthouse for the Blind and Visually Impaired and the Paul K. Longmore Institute on Disability at San Francisco State will take place this year from November 4-5, 2017. Tickets available now!

It takes a lot of work to organize a festival. I interviewed Karen Nakamura and Sara Acevedo, jurors for this year’s festival and asked about the process of selecting films from their perspectives. You can also check out my interview with Superfest judges from 2016. Please note: responses have been condensed and edited.

Is this your first year of judging? Tell me about your experiences judging this year. 

Uber and Lyft have the potential, as yet unrealized, to put real pressure of public transportation regarding their astounding lack of customer service for people with disabilities....

https://goo.gl/sijk9W

Too often, patients cite health care costs as a main reason for not getting the care they need. However, an obstacle that often goes overlooked is access to reliable transportation.

A 2013 meta-analysis of 25 studies published by the National Center for Biotechnology Information shows that anywhere between 10 and 51 percent of patients reported inadequate access to reliable transportation as a barrier to accessing health care. Additionally, one study showed that 82 percent of those who had access to transportation kept their appointments, while 58 percent of those who did not have access to transportation did not keep appointments.

How can this problem be addressed? Simple.

With the push of a button, Uber and Lyft – two location-based technology phone applications that make hiring an on-demand private driver painless – have teamed with hospitals and medical providers to ensure patients have the transportation the need to make their appointments. And in some cases, it’s even covered by Medicare Advantage and other insurance plans!

Nationwide, more than 17 million seniors and individuals with disabilities have chosen to enroll in a Medicare Advantage plan because of the better quality care and innovative services offered through the program. By eliminating this critical transportation barrier one thing is clear: a healthier America is on the horizon.

Facebook today announced a new Crisis Response hub page to keep all its emergency features in one place.

• The aforementioned safety check, which will show up at the top of the hub if you’re in an affected area
• Links to helpful crisis-related articles, photos, and videos
• A community help feature that lets you ask for and give crisis advice
• Fundraisers to donate to people affected by the crisis and nonprofits helping with relief efforts.

When I was a state emergency manager, we created shelter annexes for each of these types of individuals – they were not included in the core plan. After Hurricane Andrew, a Category 5 storm that struck south Florida in August 1992, there were a lot of people coming to shelters who were on oxygen. Creating a separate special-needs shelter for them meant that, when these people showed up to their nearest shelter, they were told to go elsewhere. They could not go to the closest shelter, which did not accommodate people who relied on public transportation or had lost their cars in the hurricane. It also meant that these people could not be with their families – an absurd thing to ask during a time of crisis.That was a mistake. This should never happen.

Unfortunately, too many emergency managers do not take into account the community as it exists. Instead, they create a plan based on an idealized community, and people are invariably left out. Communities are complex. In every neighborhood, there are elderly folks, people with disabilities and challenges, people with pets, and people with children.

Everyone in the community should be involved from the start. That includes planning for how to communicate with everyone – how to disseminate critical information – throughout the emergency. Some people are hard of hearing or visually impaired, and details must be included on how to reach these people so they know where to go and what to do.

Some emergency managers do not have the time or money to ensure shelters are set up to accommodate the entire community. Others simply do not know where to turn or who to ask to accommodate all members of the community. Both of these situations point directly to a key solution: include the community in the plan, and include the community in the response. Resources and knowledge are already part of the community and should be included at the table from the start and throughout the response.

There are so many advantages to this approach – most importantly, a more effective response. If that is not enough of a reason, consider the money and resource savings. For example, a local grocery or big box store included in a plan is able to provide resources more quickly – and likely at a much cheaper cost – than having those resources provided by the government.

Lois Curtis

Lois Curtis is well-recognized nationally not only as a successful artist, but also as a powerful advocate for people with I/DD.  To many in the advocacy world, she is best known as the face of Olmstead v. LC and EW, the 1999 landmark Supreme Court decision securing people with disabilities’ right to live in their community rather than in institutions.

Although Lois was admitted voluntarily to Georgia Regional Hospital in Atlanta when she was young, she remained institutionalized against her will.  As she got older, Lois demanded her right to live in the community and called Atlanta Legal Aid Lawyer Sue Jamieson relentlessly. Together, they fought to prove the State had violated the Americans with Disabilities Act by failing to support her in the community.  Her case eventually made it all the way to the U.S. Supreme Court.  The Justices issued a ruling that requires states to eliminate unnecessary segregation of people with disabilities and to ensure that people with disabilities receive services in the most integrated setting appropriate to their needs.  Although the Olmstead decision only involved a psychiatric hospital, courts have clarified that Olmstead applies to all state and Medicaid-funded institutions, including nursing facilities. Soon after the decision and with increased Department of Justice activity, states began developing and implementing policies and plans to expand community-based programs under Medicaid to meet their obligations for individuals with disabilities under the decision.

WE’VE ALL READ headlines like this before: “This Student With Cerebral Palsy Went To Prom With Her Best Friend And It Was Magical.” For decades, the media has tended to portray people with disabilities (or those around them) as inspirations or heroes—a genre of reporting known as “inspiration porn.”

There are countless stories about waiters helping to feed patrons with disabilities (and getting a new job for doing so), friends helping disabled people with basic tasks that have nothing to do with their disabilities, and very public “promposals” similar to the one touted in the headline above. Many of these stories go viral.

Most recently, the internet’s collective heart melted over a story about a mother who received an honorary MBA degree after attending classes with her quadriplegic son while he was in business school. According to the story, first reported by The Orange County Register on May 20, Judy O’Connor moved from Florida to southern California to help her son Marty, from taking notes for him in class at Chapman University to writing down his answers for exams. It was at the Chapman graduation ceremony that Judy received the degree—originally her son’s idea.

Three days after The Orange County Register published the article, the Associated Press picked it up, and soon nearly every major news outlet in the United States, from CNN to Peoplemagazine, had covered it.

THERE IS NO DOUBT that most of these stories—aimed at restoring faith in humanity— are grounded in good intentions. But this emotion-driven journalism is the hallmark of inspiration porn, which often focuses on the altruism of those who help people with disabilities. Although the term has been around for several years, “inspiration porn” was popularized in a TED talk that the late Australian activist Stella Young gave in April 2014. Her talk now has more than 2.4 million viewsonline.

Of the eight news values (proximity, timeliness, prominence, magnitude, conflict, oddity, impact, and emotion), emotion too often rises to the top when telling stories about disability communities. The story about the mother getting an honorary MBA degree is newsworthy because it tugs at readers’ heartstrings. But inspiration porn rarely goes beyond that to address major disability issues like workplace discrimination, stigma and bullying, and accessibility in schools. Does Chapman provide personal aides for disabled students like Marty O’Connor? How can colleges better promote a more inclusive learning environment for disability communities at large?