Top 10 #Disability Events in #2016 from the @LeadOnUpdate

Disability Top 10 GraphicNow 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

Overtime in a dictionary under a magnifying glassThe 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.

8. #DisabilityTooWhite

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.

5.  Speechless

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

Justice scales and flag in a courtroomIn 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.

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.

Honorable Mentions

  • 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!

Tammy Duckworth sitting on the floor of the House


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.”


Is there something you think should have been on the Disability Top 10? Let us know in the comments or Tweet us @leadonupdate!

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Statement from the Lead On Network on the Orlando Shooting

We at the Lead On Network are devastated and saddened by the horrible events at Pulse Nightclub in Orlando, Florida on Sunday morning. Reports state that 49 people were killed and 53 are injured. It is being called the deadliest shooting in American history.   We at the Lead On Network agree whole heartedly with President Obama that this “was an act of terror and an act of hate.”

Regardless of the specific motivations of the killer, what is clear is his choice of target: the LGBTQ+ community. In cities across the country, June is a month for Pride; it is a time for celebration and solidarity. In the movement toward inclusion and tolerance, LGBTQ+ nightclubs have a standing history as a place of safety, affirmation, and empowerment. Unfortunately, on Sunday, one man decided that 103 people in Orlando were not worthy of respect, were not worthy of their humanity, and were not worthy of their lives.

Extremist beliefs have been and continue to be used to justify hate crimes, and this kind of violence — a hate-motivated attack against LGBTQ individuals — is far too common. It has become so ubiquitous that more than 54% of LGBTQ individuals say they’re concerned about being the victim of a hate crime. Anti-LGBTQ+ rhetoric and violence-laden sentiments are a common part of American culture. We see it in people’s homes, on the streets, in schools, and sadly in our economic and political institutions.

This recurring pattern of devaluing and dehumanizing people who are LGBTQ+ or Latinos, like those who were enjoying their night out at Pulse in Orlando, or any other marginalized group,  is the heart of America’s problem.  As Americans, we cannot say that we care for the rights of any individuals unless we speak out against hatred, bigotry, and discrimination in all its forms; unless we work to assure justice for all people, and unless we recognize the value of every person’s life.

Violence is the legacy of intolerance, and the status quo is unacceptable.

At this time of crisis, we recognize that the divisive impact of all forms of bigotry and prejudice, and affirm and celebrate human diversity. We are all in this together.

Lastly, while we share in the grief of a nation at this preventable loss of life, let us continue to reshape our nation and take action to create a space that is steeped in the core values of inclusion, tolerance and love.

Let us continue to gather and to celebrate our true selves remembering the words of Harvey Milk, that all people “regardless of sexual orientation or identity deserve a safe and supportive environment in which to achieve their full potential.”

Let us demand action to avert such acts of horror as took place this Sunday, and call on policymakers to address access to the tools of such violence, such as the acquisition of a weapon that lets someone shoot large numbers of people. Our task must also be to organize against any policymakers that have used hate as a platform and who continue to take the concerns of the gun lobby more seriously than that of the American people. We must also call on them, and all Americans, to examine and take action against the underlying issues of intolerance, discrimination, and hate that not only exist but have been amplified in our political, economic, and social systems.

One of our favorite intersectional leaders, Danielle Moodie-Mills said it best,

“It’s not enough for us to be outraged today and ignore the fact that we have the power to stop this type of carnage and disrespect.

Our power is our voice.

Our power is our vote.

Together we win.”

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6 Reasons Why You Hate NC’s Anti-Trans Legislation

By now you have likely heard of the recent legislation passed in North Carolina causing a backlash from the LGBT Community as well as many other allies in the civil rights community. North Carolina’s HB2 is controversial not only for the fact that it was designed specifically to reverse protections granted to the trans community to have access to bathrooms without persecution, but also because it was passed in a special session that seems to have had no other goal than to disenfranchise this group.

It is not just happenstance that most of the civil rights community has spoken against this law, but here are some reasons the disability community should find it exceptionally distasteful:

  1. Insult to injury – HB2 has been offered by the North Carolina Legislature as a means of protecting the rights of North Carolinians, from being discriminated against by its transgender citizens, making HB2, likely the most significant piece of discriminatory legislation shrouded in righteousness since the inclusion of the Jesse Helms Box in the American s with Disabilities Act. (Another banner day for North Carolina.)
  1. Scumbag LegislatorScumbag Steve - Promises equal rights to NC Citizens, Decides rights for LGBT folk is discrimination The references to HB2 are also all titles that a common sense person would never consider changing, much less pay attention to like “Wage and Hour” or “Multiple Occupancy Bathroom facilities” Though the obvious goal of the bill is to protect North Carolinians from Transgender Citizens this important closed door issue wasn’t so important that they needed to be honest in the title.
  1. Crabs in a Barrel – HB2 does not apply to people using bathrooms (1) For custodial purposes, for maintenance or inspection purposes, to render medical assistance, or to accompany a person needing assistance. This deference being paid to caregivers is definitely a testament to the work of disability advocates, but it seems to assume that the disability community will be satisfied with discrimination of others as long as they can have their PA or caregiver. Not only is this a blatant attempt to create a hierarchy of civil rights and access among the civil rights communities, it makes one wonder if the North Carolina Legislature is even aware of the LGBT population that also consider themselves people with disabilities.
  1. Systematic Discrimination – In another parallel with civil rights and specifically disability rights legislation, HB2 addresses all Agencies, boards, offices, departments, and institutions of the executive branch, including The University of North Carolina and the North Carolina Community College System. Much like the Rehab Act or the ADA, North Carolina seeks to make this discriminatory law a part of the state culture and general norms. By making this policy a part of schooling it means that not only will be we discriminating we will be teaching future generations to hate as well. Even state and county contractors may not be compelled to act decently by the details of their contracts meaning this will be a cemented part of the North Carolina employment culture as well.
  1. quitting - some people wish they knew how [image 2 cowboys from Brokeback mountain]Why Can’t We Quit You – Not only has NC passed this crap legislation they have made it exceptionally difficult for it to be undone or even challenged. HB2 has a provisions saying that it “supersedes and preempts” any other law or legislation and that “no person may bring any civil action based upon the public policy expressed herein.” This should bring rage to any of us that watched the ADA, Civil Rights Act and Voting Rights Act be sapped of their efficacy but legislation like this gets to sit on a pedestal.
  1. You Shall Not PassGandalf the Grey shouting You shall not pass!In addition to addressing the right of trans individuals to use the
    bathrooms of choice at school, it addresses the issue of bathrooms at work by not only removing access to bathrooms but also employment. HB2 removed many of the ordinances that could protect LGBT North Carolina Citizens from being fired because of their identity. As if matters could not get even worse, HB2 has the capacity to unravel protections that have been enacted to protect any marginalized groups in North Carolina. The Charlotte Observer notes specifically that the law affects “how people can pursue claims of discrimination because of race, religion, color, national origin, biological sex or handicap [sic], sending those claims through the federal system instead of state courts. The law also means a city or county cannot set a minimum wage standard for private employers.”

The choice that the North Carolina Legislature has made is a bad choice and should not be supported by anyone who believes in inclusion or equality. Considering the importance of access to the disability community, such a blatant restriction on public facilities should raise an ADAPT sized rally of red flags, but it also points to the short memory of the North Carolina legislature. We have all seen these restrictions before placed upon lunch counters, water fountains, schools and ultimately the workplace as well. They represent the most heinous discriminatory practices that have been utilized to marginalize any American that fits into the box of the other. Like those other cases, these restrictions are being placed upon citizens of the state. These are not strangers these are not criminals, these are not immigrants. North Carolina is seeking the restrict their trans citizens from using facilities  and participating in an employment system that the Trans community in North Carolina has paid for. They have paid with their personal investment in their homes, their dedication to their community, but most importantly with their tax dollars, and have as much a right to the usage of these facilities as any other citizen of the State.

If you are a member of the disability community you have 6 reasons listed above to cause you to foam at the mouth about HB2, but in reality you only need one: In one of his most famous quotes, Martin Luther King Jr. compares justice to a well made shirt (and if you are wondering it was Jesus’s shirt). When crucified, Jesus clothes were split among his guards, but his shirt could not be split because it was woven out of one piece, so instead of tearing it (which would ruin the shirt) the guards placed bets on it to see who would get the garment. Normally we use this quote to denote how if we unravel or tear a part of a garment we will ruin it, in the same way that if we unravel or tear a part of our freedom we will ruin that as well.  This quite also points to another truth that is as true today as it was in MLK’s time. Much like those guards, we are competing to see who will have possession of our freedom. We must take this game seriously if we are going to win because rest assured, everyone is vying to take that garment of freedom – of destiny– away.

“Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” – Rev. Dr. Martin Luther King, Jr.



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Black #Disability History: Bobby Coward, Advocate

Bobby CowardIt is still hard to believe that it has been more than a year since the passing of Bobby Coward. A mainstay in the DC. Disability advocacy scene, Bobby Coward was a tireless advocate for wheelchair-equipped taxicabs, wheelchair lifts on public buses and wheelchair access to public housing and especially increasing the quality of life for all individuals with disabilities. He served as the Executive Director of Direct Action but was probably best known (and feared) as the head of Capitol Area ADAPT. With a significant focus on transit policy, Bobby was a key voice in the discussion of accessible transportation, and in a major city like DC, he was a force that did not allow individuals with disabilities to be ignored in the conversation.

As we have mentioned before, Bobby epitomized constant vigilance, and for a significant time was the name when considering disability advocates that were also members of the Black Community. Though serious about our work and engagement, Bobby still always had time for the growing parade of young people seeking to learn more about their place in the disability movement.

To learn more about Bobby, interrogate any of our colleagues at @NationalADAPT or read his obituary here.


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Black #Disability History: Martha Louise Morrow Foxx, Inspired Teacher

Martha Louise Morrow Foxx (Oct. 9, 1902 – 1985)

“She developed in all her students’ self-reliance so that they could eagerly look forward to the time when they could support themselves out in the world”

A young african american woman with glasses in a white knee-length dress in a garden

Image: Martha Louise Morrow Foxx, a young African American woman with glasses in a white knee-length dress in a garden

Born in Charlotte, North Carolina, Martha Louise Morrow became partially sighted in infancy. An avid student studied at Governor Morehead School for the Blind, followed by Overbrook School for the Blind in 1917, after her family moved to Philadelphia. She graduated in 1927 and began college at Temple University. However, after only one year, she moved to Mississippi to work at the Piney Woods Country Life School.

The Piney Woods School was founded in 1909 by Laurence C. Jones in rural Rankin County, Mississippi, which had an eighty percent illiteracy rate, as a place to teach young black men and women how to be good workers.  Jones taught students about agriculture, carpentry, dairy farming and construction. But with the arrival of Martha Louise Morrow,  the Mississippi Blind School for Negroes was founded on the campus. Prior to this time, there was no formal education for black, blind students in the state of Mississippi.

Martha Louise Morrow was hired in April 1929. Less than a month later She was responsible for the 24/7 care of 10 blind students  – their personal care, medical attention, residential needs, and educational services. She was teacher, headmistress, nurse, cook, principal, everything.  She ensured they were afforded the same experiences as their sighted counterparts, and were held to the same expectations, including completing assigned chores and job assignments.

Knowledgeable music, Morrow was asked to help organize a blind quartet known as the Cotton Blossom Singers, to gain financial support and fundraise for the school. After their graduation, those youth would become the nucleus of the Five Blind Boys of Mississippi.

She married Alexander Foxx in 1937.

From Wikipedia: “Foxx’s teaching philosophy embraced a very modern dynamic of learning outside the walls of the classroom and of incorporating nature into lessons. She often took the children into the surrounding woods to hunt for plums and to pick wild berries. Ernestine Archie, a graduate of the school’s first class of 1934, recalled Foxx’s determination that the visually handicapped students be allowed to enjoy outings just as the sighted students did and that their senses of touch, taste, sound and smell made up for the deficiency in sight.”

Because of her philosophy, tenacity, and extraordinary work, as an innovative educator and trail-blazing teacher,  Martha Louise Morrow Fox laid a foundation for the education of black, blind students in Mississippi that leaves a legacy to this day.

You can read more about her here:

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Black #Disability History: Daymond John, Entrepreneur

Daymond Garfield John (Feb. 23, 1969 – )

“My mother always said, ‘It takes the same energy to think small as it does to think big, so dream big and think bigger.”

Image: Daymond John; a bald African American man in a dark suit, white shirt and silver tie

Image: Daymond John; a bald African American man in a dark suit, white shirt and silver tie

Daymond John might be most familiar to folks as one of the investors on Shark Tank, but in addition, he is an entrepreneur, author and founder/president/CEO of the clothing line FUBU.

John’s progress in school was uneven. He would excel in math and science, yet would struggle with reading. “Literally, I couldn’t spell the word ‘because’ for 4 or 5 years. I wouldn’t know how to spell my middle name, Garfield. When I read a book, I got tired.” He had severe dyslexia, a learning disability.

John credits his high school’s cooperative program, where students worked full-time one week and went to school the next with fostering his entrepreneurial spirit. Skilled in creative and analytical thinking, he focused on his strengths, eventually founding the urban apparel company he named FUBU (For Us By Us). It all started in 1992 with John sewing simple tie-top hats out of his childhood home for $10 apiece. Today, the brand is worth over $6 billion.

You can read about Daymond John and his dyslexia here:

You can read about how Daymond John started FUBU here:

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