Now that we have delved into the Winter Holidays, it is that time of year again where we take stock in what has transpired over the last 12 months and look forward to the turning of the clock and the next year upon us. Though every year we prepare for new adventures and challenges, this year our annual ritual of resolution and reflection certainly holds much more meaning for everyone. In the wake of an unprecedented presidential election, market upheaval in Europe, and continued conflicts abroad – not to mention a seemingly unending list of celebrity deaths – there are many who are equally nervous for the future as they are ready to bid 2016 adieu.
As we prepare for the arrival of the baby New year and the (long awaited) departure of Old Man 2016, here are some of our top events affecting disability in 2016. (These are in no particular order, but we made the numbers go backwards so you’d have something to look forward to in 2017. )
10. The Election of Donald Trump
Without a doubt the event that will have the most significant impact on the disability community is the election of Donald Trump as the President of the United States. Though there is plenty of conjecture on the internet about the sort of person the President Elect is, his core beliefs as well as his stances on policies that have been very clear. Individuals with disabilities, along with people of color, immigrants, and Muslims have been a direct target of Trump’s America. In addition to the support of policies that would loosen civil rights protections, as well as the proposed defunding/privatization of Medicare, individuals with disabilities have also had the experience of being mocked openly by the President Elect on national television. Though it has been brushed off by the incoming Administration as a misunderstanding, it is not one soon to be forgotten by the disability community.
9. Labor Overtime Rule
The Department of Labor published a rule on May 23, 2016 that requires that people who make $47,476 or less, if they work more than 40 hours in a week, should receive overtime pay. Previously, that amount had been $23,660. For people with disabilities who rely on personal assistance services, most of which are funded by Medicaid, this has immense consequences. The key component is money. Many people who provide those services would now fall within the purview of the rule and so would have to be paid time-and-a-half for their hours over 40. State Medicaid rates do not account for overtime. For many, not being able to “afford” these services makes the difference of whether they can live independently at all.
The Overtime Final Rule became effective on December 1, 2016. However, the Department of Labor is implementing a limited non-enforcement policy for providers of Medicaid-funded services for individuals with intellectual or developmental disabilities in residential homes and facilities with 15 or fewer beds. This non-enforcement period will last until March 17, 2019. The idea is to give agencies (like DOL and HHS) and federal and state agencies and policymakers to better coordinate and understand the potential unintended consequences and ensure that the lives of people with disabilities and their ability to live independently are not harmed.
- Latest on the DOL Overtime Rule and What it Means for People with Disabilities
- The Overtime Rule and its Implementation (USDOL)
For the past few years, disabled activists of color have been pressing the concept of intersectionality and the idea that all communities benefit when we may bring our whole selves to the table. In order to best support people with disabilities – especially those of color, disability and race cannot be addressed in a vacuum, but rather we must seek to examine the unique experiences that often cause race, disability, sexual orientation, and poverty, to be inexorably linked. Though the value of inclusion for all is a mainstay of disability core values, in practice there has been a significant disconnect with communities of color and individuals of color with disabilities.
In reaction to this, activist Vilissa Thompson along with disabled activists of color promoted the #DisabilityTooWhite discussion on twitter. The hashtag not only called out the blatant whitewashing of the disability experience but it also sought to give voice to the activists of color who refuted the idea that they must choose advocating for racial equality OR disability inclusion.
In addition, the conversation further gave notice to the disability community that activists of color have felt isolated, and that the largely white leadership is not ready to address issues related to communities of color who not only have disabilities but are further separated for m disability supports because their disabilities exist as a part of their racial identity. Though it is not clear what the final outcome of the #DisabilityTooWhite Conversation will be it represents an open admission that if the disability message is to be successful it must do so with the inclusion of communities of color as well as other marginalized groups.
7. Cancer Moonshot
People with disabilities are more likely to live in poverty, and less likely to have access to early screenings, therefore Cancer is a real issue. Because of this, President Obama’s Cancer Moonshot led by VPOTUS Biden is a significant marker in disability policy for 2016. All ten recommendations of the blue ribbon report resound with our community, but the first lays a foundation that could have come straight out of disability policy — a network for direct patient involvement. This is informed choice exemplified, increasing patient’s access to what therapies work, in what types of people, for specific types of cancer. This way people dealing with cancer can get the right information at the right time to make the right decision. The language of these networks will be designed in a culturally and linguistically competent way, putting equity out front.
6. Epi Pens
The epinephrine autoinjector or epi pen has been the mainstay of personal treatment for anaphylaxis since the 1980s. Affordable, easy to use, and ever present, the epi pen was universal staple in nursing stations first aid kits and even school knapsacks that was accessible by everyone. That is until a significant price hike in 2016 raised the prices of epi pens by almost 500%.
This price hike caused significant uproar as well as disdain toward the pharmaceutical community as accusations of price gouging and generally taking advantage of individuals who don’t like dying from anaphalpetic shock. In addition to the outcry and congressional hearings, the whole issue took a dramatic turn when almost in response to an uncaring pharmaceutical industry a new cheaper version of the epi pen was developed within months.
More than anything the epi pen fiasco is not only a testament to how quickly any individual can find themselves discriminated against as a person with a disability but also the general lack of control all Americans have over our fate if our medical alternatives become too spendy for us to have quality lives.
Even in a year where the Paralympics were aired for the entire world, the disability television event of 2016 is without doubts the ABC television show, Speechless. For the uninitiated, the series follows the DiMeo family, each with a unique personality: Maya, a take-charge British mother with a no-holds-barred attitude; her husband Jimmy, who doesn’t seem to care what others think; Dylan, their no-nonsense athletic daughter; Ray, their middle child who acts as the “brains” in the family; and their oldest son, JJ—a high schooler with cerebral palsy who has a biting wit and sense of humor.
Though the show is indeed a family-based fish out of water story, the portrayal of JJ, and his interaction with his family and the new community offer an insightful and truthful take on disability identity while retaining the humor, excitement, and in truth, entertainment of a family-based sitcom. Yes, there are inspirational plots and stories of shame and humor, but hey, they are no different than portrayals offered on shows such as the Middle, or Parenthood, that do not have a character with a significant disability in the main cast. As our pal David Perry said in a story for the Atlantic, when “the new ABC comedy dropped in June, Speechless became one of the most important shows about disability in the history of television.” And after having the opportunity to talk to the show’s creator, we at the Lead On Update are looking forward to what comes in Season 2.
4. Intellectual Disability and the Death Penalty
In June of 2002 the US Supreme Court ruled that sentencing people with intellectual disabilities to death is a violation of the Eight Amendment and that such executions are a form of “cruel and unusual punishment” (Atkins v. Virginia). What Atkins v. Virginia doesn’t say is, how can a prosecutor determine a defendant’s mental capacity? Who is and who is not a person with an intellectual disability?
The Texas Court of Criminal Appeals (CCA) created their own assessment for determining whether someone has an intellectual disability, referred to as the Briseño factors. This year, the Supreme Court agreed to hear Moore v. Texas, a case that specifically looks at the these factors. So where do these come from…CCA’s example of an individual that most Texans would agree should be exempt? Lennie Smalls, the intellectually disabled character in Steinbeck’s Of Mice and Men. Yes, a FICTIONAL character is being used as an example for determinations in death penalty cases. The Briseño factors reinforce every ridiculous stereotype about intellectual disability.
The opening arguments from November 29 SCOTUS case are promising with five justices raising concerns about the arbitrariness of allowing states to set their own criteria for deciding who is intellectually disabled. Justices Elena Kagan and Sonya Sotomayor questioned whether application of the Briseño factors excluded some individuals whom clinicians would regard as being intellectually disabled. The Court is expected to rule on the case by June 2017.
- Moore v. Texas and Why it’s Important for Intellectual Disability and the Death Penalty
- Moore v. Texas Case Files (SCOTUS BLOG)
3. #Education, Loan Forgiveness, and Disability
Last year, the President signed a memorandum to make it a little bit easier young people to pay off their educational loans and promoted a Student Aid Bill of Rights. One of the key parts of that was that student loan borrowers who are totally and permanently disabled (i.e. receiving disability payments from Social Security) are eligible to have their student loans completely discharged.
However, because the cancellation of a loan is considered as income by the Internal Revenue service, (i.e. the person is seen as getting a “windfall”), that means they now owe thousands of dollars in taxes…all at once, basically swapping out one bill for another. If someone can’t afford to pay off their educational loans because of a disability, they certainly can’t afford to pay off the thousands of dollars in taxes off of those loans if they are cancelled.
Thus was born the Stop Taxing Death and Disability Act (S.2800) from Senators Coons (D-Del.), King (I-Maine), and Portman (R-Ohio). The legislation exempts from income tax federal and private student loans that are discharged due to the death of a child or total and permanent disability. Section 108(f) of the Internal Revenue Code Congress already exempts certain cancelled student loans from income taxes so this is just adding a couple of additional categories.
That’s the reason the Department of Education can’t just “cancel” the debt. Because of the potential taxes that would then make people with disabilities liable to the IRS.
2. The Killing of People with Disabilities in Japan
A caregiver at a group home for in Sagamihara, Japan went on a killing spree, July 26, 2016, slashing to death 19 people with various disabilities. Twenty-six people were wounded, 13 of them critically. The killer calmly turned himself in to police saying, “All the handicapped should disappear.”
On the day that the American disability community celebrates its independence, instead of exultation, it was news of “one of the worst and deadliest targeted attacks on disabled people since the Nazis decided to erase them from the earth.”
The lack of coverage from mainstream media (and social media), especially as compared to other mass killing events drew the attention and ire of the US disability community. While there was mention of the killer’s name, motives, habits, lifestyle and history there was nothing at all about the people with disabilities. Not those that died; not those that lived and certainly nothing about the experiences of people with disabilities in general living in Japan.
The story stands as an example of the erasure of people with disabilities, even from their own deaths, and the ongoing ambivalence toward these kind of killings, and in truth most other violence targeting people with disabilities.
- The New York Times started a Weekly Series by and about people living with disabilities. It began on August 19, 2016 with Rosmarie Garland-Thompson’s stereotype-breaking essay called, “Becoming Disabled.” http://www.nytimes.com/column/disability?action=click&contentCollection=Opinion&module=ExtendedByline®ion=Header&pgtype=article
- When House Democrats held a sit-in in June demanding votes on gun control following the mass shooting in Orlando, Congresswoman Tammy Duckworth participated in the sit-in, getting out of her chair and on to the floor with everyone else. But what makes her particularly “badass” and gets her the honorable mention was the smuggling in of a cell phone…in her prosthetic leg!
1. In Memoriam
Normally this is where we would list the important figures lost for the year that had a significant impact on disability, or espoused the values of the community. As 2016 has been incredibly harsh, we at the Lead On Update are reminded of the words of Carrie Fisher whom we also lost this year.
“No motive is pure. No one is good or bad, but a hearty mix of both. And sometimes life actually gives to you by taking away.”