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Top Ten Disability Policy Events Of 2017 From The Lead On Update

What did 2017 mean for the Disability Community?

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Happy Holidays and a very Merry New Year from our LeadOnNetwork family to yours! These last few days of 2017 and first few days of 2018 are that time where we reflect on what has transpired over the last 12 months and start thinking about what lies ahead. 2017 has been a very full year for the disability community, and not necessarily a positive year. And yet we, as a community, have fought back against inequity and we survive. 2018 promises new challenges but have no doubt that together we will continue.

10. Intersectionality – Its movement into the mainstream and misconstruction as a buzzword meaning diversity

Intersectionality is a word that has come up more and more often in 2017, and quite wrongly it has almost become a shorthand for “diversity.” Intersectionality is a concept often used in critical theories to describe the ways in which oppressive institutions (racism, sexism, homophobia, transphobia, ableism, xenophobia, classism, etc.) are interconnected and cannot be examined separately from one another. The concept first came from legal scholar Kimberlé Crenshaw in 1989, in reference to African-American women.

One of the best examples she gives of what this looks like comes from a legal case "Degraffenreid vs General Motors." In the lawsuit, 5 black women sued GM on the grounds of race and gender discrimination. The problem arises because our anti-discrimination laws are separated - discrimination by race and discrimination by gender. “The courts’ thinking was that black women could not prove gender discrimination because not all women were discriminated against, and they couldn’t prove race discrimination because not all black people were discriminated against.” The women lost.

Racial and gender discrimination overlapped not only in the workplace but in other arenas of life; equally significant, these burdens were almost completely absent from feminist and anti-racist advocacy. Intersectionality, then, was my attempt to make feminism, anti-racist activism, and anti-discrimination law do what I thought they should — highlight the multiple avenues through which racial and gender oppression were experienced so that the problems would be easier to discuss and understand. – Kimberlé Crenshaw

People can have disabilities and be a member of a minority racial or ethnic class, someone can be both LGBT and have a disability. So what is the biggest barrier to addressing intersectionality for our community? The answer is both simple and complex - recognition. Perception can determine how someone is treated and, right or wrong, that creates a hierarchy of expectations. You can have a disability or be LGBT or a woman, but not more than one - the same issue from Degraffenreid. Whether intentional or not, individuals find themselves relegated to one identity over another finding themselves never fully able to hold close all parts of themselves and never fully having their needs met.

Intersectionality allows us to recognize the overlaps and it pushes all of our movements and organizations to be inclusive. Whether it is gender, sexual orientation, or race/ethnicity, disability can and does intersect with every identity. Every. Single. One

9. National Disasters & Emergencies

2017 has had one of the most active and most destructive hurricane seasons on record with three major storms that mercilessly battered the Caribbean and Gulf States. Hurricanes Harvey, Irma, and Maria were a triple threat from which the entire island of Puerto Rico as well as significant portions of Houston and the gulf have yet to recover. Tacking on an exceptionally devastating round of California wildfires, disasters have been on the mind of many Americans.

Post Hurricane Katrina, many individuals in the emergency preparedness and disability communities worked very hard to ensure that individuals with disabilities were considered before an emergency and included in the planning processes for natural disasters. It was well known that the lack of support, and negligent attitude about supporting individuals with disabilities led to a significant loss of lives, and that with planning and engagement the events we noticed during Katrina would not be repeated.

The disasters of 2017 however, have proven that not only has the inclusion of individuals with disabilities not been accomplished, but also that there is still much to be done even to ensure general access to basic services during emergencies such as communication, connection to utilities and other services, or even access to shelters. In Puerto Rico, this was compounded with not only responders who were unprepared to communicate with rural areas in which Spanish only was spoken, but with an emergency response system that was unprepared for the significant hurdles tied to Puerto Rico’s neglected infrastructure for water and power.

8. Transition of the Trump Administration

Perhaps one of the most intriguing testaments as well as points of contention with the Trump Administration has been the handling of the administrations transition into power and their responsibility for taking command and control of the Executive branch functions. As a part of his campaign promises, Donald Trump came to Washington DC claiming that he would “drain the swamp” and supposedly create a more honest government that was free of over regulation and a glut of Federal Employees with questionable ethics. Whether or not the Trump administration has fulfilled this promise is questionable. The appointees that have been put into place have all brought a significant amount of controversy For many they do not seem to be qualified beyond their connection with the Trump Brand – see Ben Carson and most noticeably Matthew Petersen). For those that actually have expertise in their fields they definitely do not appear the most ethical choices as they certainly seemed to bring conflicted interests along with their expertise. (see Aijit Pai regarding Net Neutrality and the aforementioned Betsy Devos.

While the appointees that have been put forward by the Trump administration have brought second thoughts and controversy, the most significant affect from his appointments has been in the areas that he has chosen not to fill. As noted by this CNN article there are more than 4,000 positions to be filled along with 1,200 that require Senate confirmation. Though the importance of this is underplayed by the 45th President’s administration filling these roles are not only key in maintaining the policies and spirit of the current administration, but also or the knowledge transfer and management of the Executive Branch’s agencies and processes. By not filling all of these roles, the Trump administration has created an ineffectual government in which the possibility of agencies fulfilling their missions in an expeditious and efficient manner is highly unlikely. Agencies need the political appointees not only to have a good sense of what is wished of them by the administration, but also to ensure that the current administration becomes invested in the missions and outcomes of these agencies. By not filling these posts, the Trump administration implements a self-fulfilling prophecy in which government is unable to function and is seemingly disconnected from the support of the President. For the disability community, the lack of investment in the agencies that affect disability policy is yet another example of the disinterest bordering on apathy to the personal agency, needs, and policy mandated inclusion of individuals with disabilities. While a few appointments have been made for disability agencies, the leadership of these agencies is still lacking and this lack of representation in leadership roles makes one wonder if the lack of representation is due to a future plan of changing or unraveling the missions of these parts of the Executive Branch.

7. Opiod "Crisis"

Do you know what happens when you Google “Opioid Crisis” and “Disability”? You get to read about how people with disabilities are a central part of this issue: Prescription Opioid Use among Disabled Medicare Beneficiaries or High prevalence of opioid use by social security disability recipients or How the VA Fueled the National Opioid Crisis and Is Killing Thousands of Veterans. There are many more, often highlighting that the opioid users are Medicaid or SSI users, or accommodations and recovering drug users.

Right now, drugs kill more people than cars or guns and many epidemiologists blame this increasing number of drug-related deaths on greater use of heroin and synthetic opioids, such as fentanyl. Opioids connect to the areas of the brain that control pain and emotions, increasing dopamine levels and producing a feeling of euphoria. Unfortunately, as the brain gets used to the feelings, it takes more and more of the opioid to reach that same state leading to deadly overdoses.

As a result there is a new crackdown on prescribing opioids in the management of pain and it’s putting chronic pain patients in untenable situations. There is no question of over prescription of opioids in the early 1990s and 2000s continued for much of the next decade. But it peaked in 2010 and the current ballooning of opioid-related deaths is from heroin and illicit fentanyl.

“Rates of carefully diagnosed addiction have averaged less than 8 percent [of patients receiving prescriptions] in published studies,”

- New England Journal of Medicine (2016)

In the mad rush to respond to this “crisis,” 17 states have passed laws and regulations that limit doses or duration of use of opioids for pain, and the President has set up an Opioid Task Force to create national policies to address the crisis. Some of the larger insurance companies have also taken steps to further regulate the over prescription of opioids. There are also several pieces of proposed federal legislation in Congress with nothing passed as of yet. While the need to address the increased impact of opioids on the American public is indeed important, the tone of the conversation is one that raises significant concerns for people with disabilities and individuals with chronic pain. Much of the discussion around opioids treats the issue similarly to the crack epidemic and the War on Drugs of the 1990s. Doing this leaves out the fact that opioids are still medications needed by many individuals for pain management and quality of life That is not to say that regulation is not needed, but there are those in the media who are seeking to re-brand individuals with disabilities and those that use opioids to manage chronic pain as the cause of the crisis, rather than victims of a system that is not adequately addressing the proper use of opioids or the health care needs of the individuals that have been prescribe them by physicians.

Doug Hale had pain from interstitial cystitis, migraines, and a back condition. A doctor had been prescribing him methadone and oxycodone since 2001.

"My husband Doug took his own life after being cut off abruptly from his long-term therapy for intractable chronic pain…” [His doctor] “said he would not risk his [medical] license.” [Doug] “lasted six weeks, all the while desperately searching for help…but the pain drove him to suicide as he could not bear a life of intractable pain.”
– Tammi Hale (wife)

If care is not taken in addressing this issue, the policies that are developed will ikely focus on enforcement while characterizing individuals with disabilities as burdens on the American system, while simultaneously not giving them the tools, and resources to succeed and have good health outcomes.

6. 2017 Women's March

On January 20, 2017 Donald Trump’s term began as the 45th President of the United States. January 21, more than 2 million people around the world protested, encompassing all 7 continents (yes, even Antarctica). In New York City, Fifth Avenue was a river of pink “pussy hats,” in Chicago the rally grew to such proportions that the march had to be cancelled, and in Washington, DC, almost half a million protesters marched through the streets.

Inclusion in the Women’s March on Washington was not without its bumps along the way. In particular, there were many intense conversations about race and reproductive rights. As what has become usual with disability advocacy, having disability as a part of the conversation was a hard slog which for many women in the disability community still do not believe went far enough.

While a deliberate decision to highlight the plight of minority and undocumented immigrant women and provoke uncomfortable discussions about race was a part of the movement from the beginning, disability rights were conspicuously absent from the initial Women’s March Platform. In addition, there was little consideration for accessibility.

This story had a happy ending, in large part, due to Mia Ives-Rublee, and other women with disabilities. who sought to engage the organizers of the Women’s March to connect with them and demand not only accessibility but recognition that disability too was a part of women’s lives.

The lack of inclusion was more than frustrating however, hard work of the Disability Caucus DID make a difference. Disability was added to the Women’s March Platform, an ADA tent and accessible seating at the rally were present, Sonya Huber, one of the organizers created a virtual Disability March for those with disabilities who health-wise or financially could not afford to march, inviting them to submit their names, photos and a statement on why they want to "march." The Women’s March was an historic event and because of momentous efforts from women in our community, people with disabilities could be a part of it. Additionally in subsequent marches such as the Science March and Education March, and NRA to DOJ disability was considered from the beginning.

There is still a need to be ongoing conversations with groups and organizations involved in social justice issues to ensure that disability has a place at the table and on the stage. The disability community will also have to do a better job at becoming savvy on how to be successful in these spaces as well as cultivate disability leaders to reach out and participate in the diverse social justice communities. This will not only include supporting more women and people of color with disabilities, but also making sure that our own internal prejudices around race, sexism, and hierarchy of disability do not sabotage the effort to have disability cooperate with other communities on the national stage. Marches and protests and rallies were a big part of 2017, and we anticipate will continue into 2018, as such we must be vigilant be willing to reach out to make sure that they are inclusive.

5. Tax Reform

Passed as some of the final Congressional business of 2017 the Republican Tax Bill has the potential to be one for the defining legislative moments affecting Americans especially those with disabilities. Though shrouded in the garb of reform to America’s tax and regulation system, the Tax Cuts and Jobs Act offers a significant tact cut to America’s wealthiest Americans as well adjusts tax brackets and the filing process which will likely benefit those who can afford to complete an itemized tax process. More importantly however is that the bill also acts as the groundwork for much of the policy promises that the Republican Congress had yet to find success. The bill removes the individual mandate requirements of Obamacare and is yet another step toward destroying the program in total. The bill also further promotes the idea of Heath Savings Accounts as a means of the average American paying for health care – even though many Americans may not have the extra income to participate in such savings plans. Members of both parties have spent significant time debating whether or not the Bill will ultimately be beneficial or hurtful to the middle class with one side highlighting the increase in standard deduction, while the other notes the removal of many exemptions that are important for families. Since the reforms will not be in effect for the next filing deadline there is still the possibility that changes can be made should the majority in Congress shift.

4. Rosa Maria: 10-Year-Old Girl Is Detained By Border Patrol After Emergency Surgery

One of the hottest and most contested issues in 2017 has been the current Administration’s actions as they relate to immigrants and refugees. What is often not talked about is how these policies impact individuals with disabilities. This changed in October of 2017 when Rosa Maria Hernandez, an undocumented 10-year-old with cerebral palsy, was detained by federal immigration agents in Texas after she passed through a Border Patrol checkpoint in an ambulance on her way to a hospital to undergo surgery. That’s right, they detained a little girl with a disability who was RECOVERING FROM SURGERY.

President Trump’s stance on illegal immigration has driven the number of immigration arrests up by more than 40 percent. One of the most frustrating things about implementation of these policies is that while there is supposedly a preference for law enforcement to focus on “dangerous criminal aliens” to meet agency goals and *quotas it is a hell of a lot easier to detain other undocumented immigrants – those who may be working, or have families, or, as in this case, had to seek medical help. (As a note, the previous Administration wasn’t that great on immigration efforts either).

There was no reason to arrest Rosa Maria. She is not a flight risk, nor a danger. The Due Process Clause permits civil detention of individuals only where it is reasonably related to the government’s interests in preventing flight risk or protecting the community from danger. She’s a fucking 10-year-old little girl with a disability who just had emergency surgery and was then detained away from family and her support services, against doctor recommendations and without accommodations for her disability. It is bullshit.

“I understand that C.B.P. has a tremendous duty to protect our nation but we should be devoting our resources and focus on bigger threats.” – Representative Henry Cuellar

After her detainment in October, the hashtag #FreeRosa went viral on social media with thousands of people demanding her release. She was released back to her family in early November.

* Did you know US Immigration and Customs Enforcement (ICE) has a “bed quota”? It requires them to hold an average of 34,000 individuals in detention daily. The bed quota prevents ICE using alternatives to detention (ATD) that would allow individuals who pose no risk to public safety (like Rosa Maria) to be released back to their families while awaiting immigration court hearings.

3. Betsy Devos and rescinding of OSERS Guidance

While 2017 has certainly been a seeming endless parade of news articles about bad decisions and near incompetency from the Trump Administration, not all of his appointees have been totally ineffectual in their jobs. Perhaps one of the most active part of the Trump leadership has been seen from his Secretary of Education, Betsy Devos. Her confirmation hearing, fails in social media, as well as decisions made affecting America’s schools have the possibility to stay with us well beyond the Trump Administration and in some cases roll back protections against individuals with disabilities and women that could take decades to repair.

Betsy Devos’s nomination and confirmation hearing were simply the beginning of the controversy – Devos famously has never been a user or supportive of the public school system. Her lack of knowledge about the needs of public schools as well as her lack of knowledge about disability were illustrated in rounds of questioning with former Senator Al Franken, and during their discourse it became questionable if she was aware of the civil rights protections offered to individuals with disabilities for equal access to school. In fact, many questioned if she was even aware of the Individuals with Disabilities Education Act (IDEA) at all.

What has been clear are Devos’s connection to the private prison industrial complex and her support of the McKay Scholarship Fund in Florida - less of s scholarship fund for education than a voucher program aimed at individuals with disabilities. Participation in this program strips individuals with disabilities, their due process rights under IDEA. What that means is that by accepting the voucher they CAN be discriminated against by school; they CAN be denied education because of their particular disability, and they CAN be refused services at any point during their education or simply be denied admission to any school.

What has the potential for longer-lasting damage to education for children and youth with disabilities was Devos’s actions as Secretary of Education where she has rescinded 72 pieces of guidance around individuals with disabilities. While some claim that they are “old” or “redundant” regulations, it could be a test balloon for a more significant step back from regulations and guidelines that have been protecting individuals with disabilities for years. One of those would be the regulations on disproportionality, as well as regulations on seclusion and restraint. The disproportionality guidance requires data collection on disproportionality rates in the identification placement and discipline of students of color with disabilities. Basically, a “check” to find out if things a school is doing in their processes or policies will more negatively impact these students.

In a similar vein, Devos also rolled back the requirements for enforcement of sexual assault on college campuses. Though both of these regulations do not immediately mean that students will be discriminated against, Devos’s decision removes regulations and removes national scrutiny which is seen as key to justice by marginalized groups, and implies that the last decades of racism and sexism were just some “sort of misunderstanding.”

2. En Memoriam

Suicide and mental health

Chester Bennington, 41. Lead singer of Linkin Park

Chris Cornell, 52. lead singer of the bands Soundgarden and Audioslave

The deaths of these two influential musicians further underscored the need for greater conversation about mental health and suicide. The popularity of their bands and their unique influence made their deaths especially poignant to t generation of younger music fans who had not lost their generation’s musical heroes before. Their deaths brought a new dialogue about the importance of mental health, especially for younger people, and more consideration to the importance of cultivating positive mental health attitudes and attention.

Aaron Hernandez former Tight End, New England Patriots

In what is becoming more than a trend in the discussion about the implications of repeated head injuries and its effects on professional football players, Arron Hernandez’s death was just another reminder of the significant mental health damage taking place in the name of professional sport. The former New England Patriots tight end jailed for killing his friend Odin Lloyd in 2013, committed suicide in his cell, and in his post mortem was said to have one of the severe instances of CTE ever seen in a man of his age. The results of Hernandez’s post mortem are hailed as evidence by some abut the inherent danger of football to the players and why at the professional level the game should be seriously curtailed.

Iconoclasts and Visionaries

Mary Tyler Moore – best known as the star of the "The Mary Tyler Moore Show" in which her portrayal of professional women helped to reshape the concepts of women on the small sdreen as well as the unique challenges to creating a gender inclusive workplace. Her image and her beret remained iconic for any young woman beginning her career and delving into a world of independence and self-discovery.

Norma McCorvey, Known best for her role in the landmark U.S. Supreme Court Case Roe v. Wade in which she was the eponymous Jane Roe. Though the court would end up find in her favor leading to the legalization of abortion, McCorvey would go on to be an outspoken opponent.

Peter Mansfield, As a physicist Mansfield won the Nobel Prize for helping to invent MRI scanners.

Gilbert Baker, the creator of the rainbow flag that has become a widely recognized symbol of gay rights.

George Romero – Romero is probably best known as the father of the zombie genre as the creative mind behind the 1968 classic "Night of the Living Dead," and the development of the special effects techniques to make the zombies really really scary. Spawning many imitators, and remakes, we must remember the original social commentary that was present even in the original Night of the Living Dead. Romero’s work continuously challenged us a viewers to think critically about right and wrong and to be fearful of group think and mob mentality. He challenged us with heroes that were often people of color, folks from different social classes, and women, who acted selflessly and with true humanity even in the face of gruesome violence and ugliness. A true trend setter, in his first and most important film, Romero’s hero is an African American man who acts in the most heroic manner possible only to save as many people as possible only to have his sacrifice awarded by death due to racism and intolerance.

Marian Cleeves Diamond, a neuroscientist who was one of the first to show that the brain can improve with enrichment.

Dick Gregory, 84. The comedian and activist and who broke racial barriers in the 1960s and used his humor to spread messages of social justice and nutritional health. An icon in the Black Community, Gregory’s presence is felt well beyond the stage in writings, and commentaries that seek to explore the African-American identity as well as expose the unique terrors and cultural implications of racism in America.

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1. #ADAPTandRESIST

Though 2017 was far from the first rodeo for ADAPT, they certainly saw a noteworthy increase in attention and general knowledge about the activist arm of the disability Community. ADAPT has in no way been absent from the National stage. They are a regular presence in the offices of legislators and policymakers in Washington, DC as well as across the country. In the fights around healthcare and taxes, however, National ADAPT’s presence and recognition in the mainstream media increased significantly with its peak during the Congressional votes on the repeal of Obamacare.

ADAPT is a major voice countering the desire of the Administration to kill Obamacare, and was recognized for their unwavering support of inclusion for individuals with disabilities, chronic conditions, and health concerns.

Called the “Tip of the Spear” by Rachel Maddow, the images of the removal of ADAPT Activists – many with visible disabilities and still in wheelchairs, not only communicated the urgency needed to engage Congress on health care and other controversial issues being promoted by the Republican Administration and Congress, but also highlighted the leadership of the disability community on this issue, not just for our own people, but for all Americans.

The hashtag used to coordinate the disability community #ADAPTandRESIST became a rally point for many activists within and without the disability community. ADAPT’s actions were the lynchpin in the protection of the ACA. Bravo Zulu to all of those ADAPTers out there who literally risked their bodies for us and who saved the ACA.

"In 2017, the cavalry doesn't ride on horses. It rides on wheelchairs."

– Ben Wikler (MoveOn.org)

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