Justices Face ‘Blizzard of Words’ in Special Education Case

Justice Samuel A. Alito
WASHINGTON — In a case that could affect the education of 6.7 million children with disabilities, the Supreme Court on Wednesday struggled to decide whether it should require public schools to do more under a federal law that calls for them to provide a free education that addresses the children’s needs.

Justice Samuel A. Alito Jr. said the court was being asked to choose among several finely shaded formulations. “What is frustrating about this case and about this statute is that we have a blizzard of words,” he said.

The court appeared uneasy with a standard used by many appeals courts, which have said that providing a modest educational benefit was enough. But some of the justices indicated that they were concerned about the costs that any changes could impose.

Justice Stephen G. Breyer said that a new standard might also invite costly litigation. “If we suddenly adopt a new standard, all over the country we’ll have judges and lawyers and people interpreting it differently,” he said. “I foresee taking the money that ought to go to the children and spending it on lawsuits and lawyers and all kinds of things that are extraneous.”

The case concerns an autistic boy whose parents, unhappy with his progress at his public school in Colorado, enrolled him in a private school and sought reimbursement for the tuition, currently around $70,000 a year. Under the Individuals With Disabilities Education Act, children with disabilities are entitled to a free public education that addresses their needs.

The lower courts have disagreed about what kind of programs public schools must provide. In the Colorado case, a federal appeals court ruled that a modest benefit to the boy was enough and that no tuition reimbursement was warranted.

Neal K. Katyal, a lawyer for the school district, pointed out that in the first half-hour on Wednesday two lawyers proposed nine different standards. For his part, he said an educational program was sufficient if it provided benefits that were “more than de minimis,” the standard used by the appeals court in the case Endrew F. v. Douglas County School District, No. 15-827.

Several justices expressed concerns about the potential financial burdens on school districts. “Is there any place to discuss the cost that would be incurred for, say, severely disabled students?” Justice Anthony M. Kennedy asked.

Justice Alito also appeared wary. “No matter how expensive it would be and no matter what the impact in, let’s say, a poor school district would be on the general student population, cost can’t be considered?” he asked.

But lawyers for the boy’s parents and for the federal government, which largely supported their position, said that as a general matter the schools must pay whatever the programs cost.

Jeffrey L. Fisher, a lawyer for the parents, said most cases did not require schools to spend very much. “They involve things like providing Braille textbooks, providing an iPad, providing some specialized instruction by a staff member who’s already on staff,” he said.

But he added that “there are going to be some extreme cases.” In those situations, he said, referring to the federal law, “the act does not permit cost to trump what the act otherwise requires.”

Mr. Fisher said public schools should be required “to provide substantially equal educational opportunities” to disabled children, but that proposed standard met resistance.

Justice Ruth Bader Ginsburg said the court had tacitly rejected it in a 1982 decision, Board of Education v. Rowley. Justice Elena Kagan said she had “some feeling that the word ‘equality’ is a poor fit for this statute.”

Mr. Fisher proposed an alternative for justices uncomfortable with the word “equal.” He said the court could require “a level of educational services designed to allow the child to progress from grade to grade in the general curriculum.”

Several justices said that standard could not be achieved for students with severe disabilities.

In those cases, said Irv Gornstein, a lawyer for the federal government, the court should use a different standard, one where he said “we have a slight area of disagreement” with the boy’s parents.

“We would say significant progress toward grade-level standards, not as close as possible to grade-level standards,” Mr. Gornstein said.

Justice Sonia Sotomayor asked if the court could substitute “meaningful” for “significant.” Mr. Gornstein responded that the two were synonymous, adding that he would also be content with “appropriate.” But he asked the court to avoid “meaningful” because “it means different things to different courts.”

Justice Kagan responded that whatever standard the court announced might have the same problem. “So we should come up with our own that can then be applied in different ways in different courts?” she asked.

That was the challenge, Justice Alito said. “What everybody seems to be looking for is the word that has just the right nuance,” he said.

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HCD to Launch Program for Students with Exceptionalities

Prism Student
The Prism Project at the Hartt Community Division is a performing arts experience for students with execptionalities. Students ages 7-14 years will have the opportunity to practice important social skills while participating in rehearsals for a performance on April 30, 2017. Each student performer will be paired with a University student buddy who will be their one-on-one guide and support at every rehearsal and during the performance. The Prism Project is modeled after the program at Ball State University in Indiana. Rehearsals will take place on Sundays from 1-2:30 p.m. beginning on January 29 at the Hartt School. Students of all abilities are encouraged to participate. Please contact Jackie Smith, Prism Program Director. at jacksmith@harford.edu for more information.

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Avon Woman Named ‘Ms. Wheelchair Connecticut’

Shannon Mazurick

Avon's Shannon Mazurick has been named 2017 Ms. Wheelchair Connecticut. Here she uses Text2Speech software on her laptop to communicate in the Avon Public Library Jan. 5. (Brad Horrigan)

By Ken Byron

As with other pageant competitions, the title of Ms. Wheelchair Connecticut comes with a sash. But it also comes with responsibility.

The event uses a twist on the idea of a traditional beauty pageant to give women who rely on a wheelchair more visibility. And that is what the newly crowned Ms. Wheelchair Connecticut, Shannon Mazurick of Avon, liked when she heard about the pageant.


Mazurick, 30, has cerebral palsy and uses a wheelchair to get around. It's difficult for Mazurick to speak so she uses a computer program to put words she types on a keyboard into speech.

"Advocacy has always been a huge part of my life," Mazurick, wearing a red dress with the sash draped across her chest, said in a recent interview. "I feel it is so important. And Ms. Wheelchair, the organization or the pageant, deals with advocacy."

Connecticut has not had a title-holder since 2006, when Denise Woodilla won the crown. Mazurick found out about the pageant late last year when she attended a presentation by its national title holder at Chapter 126 Sports & Fitness in Bristol, an adaptive gym for disabled athletes where Mazurick works out.

Speaking that day was the 2016 Ms. Wheelchair America Alette Coble-Temple of California, who was asked by national pageant organizers to visit Connecticut in the hope that her words would inspire someone to restart the program in this state.

Mazurick said she thought she was perfect for the title — she has lived her entire life with cerebral palsy while graduating from high school and earning bachelor's and master's degrees. She also wrote a series of children's books.

Stephanie Deible, Ms. Wheelchair America's national director, said Mazurick will be expected to find opportunities to speak out on the needs of people with disabilities. She also has been asked to organize a Ms. Wheelchair pageant for Connecticut later this year, the first one in the state in a decade.

Deible said to be eligible for the competition, contestants must rely on a wheelchair in their daily life.

"We look for someone with experience advocating for people with disabilties, who is a good communicator and can spread awareness about people with disabilities," Deible said. "Looks and appearance are not judged."

Mazurick has spoken at schools, the state legislature and other groups about the needs of people with disabilities. Mazurick said she saw another opportunity to do this with the pageant. She applied to the national organization to represent the state and in December was named Ms. Wheelchair Connecticut.

"I am passionate about advocating for the disabled community not only because I was born with a physical disability but because my father struggled with multiple sclerosis," she said.

"The state programs fluctuate from year to year because we are an all-volunteer organization and we are actively recruiting in states that don't have a program," Deible said. She said usually 25 to 30 states crown a winner each year.

In addition to laying the groundwork for a state pageant, Mazurick said she is raising money to attend the national Ms. Wheelchair America contest, which will be in August in Erie, Pa.

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Why Disabled People Are Pushing for the Right to Community-Based Services

The Disability Integration Act, or DIA, would provide a clear mechanism for enforcement to keep disabled people out of institutions.

Senate Democrats Elect Leaders For Next Session Of Congress
WASHINGTON, DC - NOVEMBER 16: U.S. Sen. Charles Schumer (D-NY) leaves after an election meeting of Senate Democrats to elect new leadership at the Capitol November 16, 2016 in Washington, DC. Sen. Schumer was elected as the incoming Senate minority leader. (Photo by Alex Wong/Getty Images)

WASHINGTON, DC - NOVEMBER 16: U.S. Sen. Charles Schumer (D-NY) leaves after an election meeting of Senate Democrats to elect new leadership at the Capitol November 16, 2016 in Washington, DC. Sen. Schumer was elected as the incoming Senate minority leader. (Photo by Alex Wong/Getty Images)

There is perhaps no greater stakeholder in the conversation about health care in the United States than the disability community. And with uncertain policy changes ahead, many disabled people are worried. They’re also trying to take action while they can to protect themselves from threats to their lives and well-being.

That’s one reason why some disabled people are pushing Congress to pass the Disability Integration Act (DIA), a law that would codify the right to community-based services for disabled people and provide a clear mechanism for enforcement to keep them out of institutions. If they succeed, the law could be a powerful tool for civil rights in the coming years—but it likely has a slim chance of passing, considering the incoming administration and Congress.

Many nondisabled people are not familiar with the fight for deinstitutionalization and the push for community-based living. Well through the 1970s, nondisabled people broadly viewed institutions as the most appropriate place for disabled people in need of long-term support services, whether they needed mental health care or medical treatment for physical impairments. In theory, they offered secure and safe housing along with trained personnel to help people with activities of daily living (like bathing and dressing) as well as sometimes complex health-care needs, which might include feeding tubes, dressing changes, and other types of skilled nursing care. In practice, however, institutions often had an isolating effect, locking disabled people out of society and exposing them to the risk of physical and sexual abuse from indifferent or hostile caregivers.

The resurgence of the disability rights movement in the 1980s pushed for a shift in the way nondisabled society viewed institutions, building up support for deinstitutionalization that culminated in the Americans with Disabilities Act (ADA) of 1990. The law strongly encouraged giving disabled people the tools to live in their own communities, including robust anti-discrimination protections.

In contrast to institutions, the provision of home and community-based services (HCBS) can allow people to live independently or semi-independently out in the world as equal citizens. Such services include aides and personal assistants, who may live with their clients or rotate shifts to ensure that individuals have 24/7 help with medical needs and tasks like attending events, going to school, and engaging with the community. In addition to being provided at home to people living independently or with family, another option for HCBS is small group living with other disabled people. Group home settings are still firmly rooted in often residential neighborhoods in towns and cities, rather than being maintained as separate and sometimes hard-to-access specialized facilities—it’s a house with a bunch of disabled roommates down the street, not the place you visit Aunt Liza in twice a year. This ensures that their residents get out and about rather than being trapped inside grim institutional settings.

Perhaps counterintuitively, research indicates HCBS programs are less expensive to administer and provide than institutionalization; it is cheaper per person in most cases to care for people at home. These programs can necessitate more complex organizational costs, as they require more coordination, but that cost is balanced out by the savings on providing services. Despite this fact, many disabled people have trouble accessing them. Both government benefits programs and private insurance have spending caps that are easy to exceed, along with service limits, like arbitrarily assigned hours limits on aides—so, for example, someone who needs 24/7 care might get 12 hours of daily care funded by her benefits program. An agency responsible for funding determinations may also make an incorrect determination about the level of care needed.

Considering those existing difficulties, paired with how the provision of health care and support services will change under the Trump administration, advocates—including disability rights group ADAPT, the United Spinal Association, the National Council on Independent Living, the National Disability Leadership Alliance, and many others—are trying to rekindle interest in the DIA. The exact nature of the changes under Trump aren’t clear, but could include reductions in funding to programs like Medicaid, which would hit disabled people extremely hard. Many rely on Medicaid and Medicare for services because they cannot afford to purchase health insurance or directly pay for services independently. Medicaid expansion through the Affordable Care Act shifted more disabled people to Medicaid, but also put more people in danger of spending cuts. If a clear mandate for community-based living is not enshrined in the law, it’s possible those people will be forced into institutions.

This is something Kayla Whaley, a children’s author with spinal muscular atrophy who uses a wheelchair for mobility and needs assistance with many activities of daily living, is very worried about. “I currently live at home with my parents,” she told Rewire via Twitter direct message. “They’ve been my primary caregivers for the large majority of my life. As they age, though, they’re beginning to have health problems of their own, and I can only assume that trend will continue. Should Medicaid (an imperfect program to be sure, but my only hope for even partial coverage of in-home care) be gutted the way many Republicans want, I fear I won’t have any avenue for independent living when my parents can no longer care for me. In that case, my only option would be institutionalization, where neglect is common and abuse has historically been (and often continues to be) rampant.

“It’s a terrifying prospect that seems more and more likely with every new round of proposed legislation designed to cut supports for disabled folks,” said Whaley.

Though the ADA made HCBS a “priority,” it didn’t provide a mandate for state and federal agencies—just anti-discrimination language that made it clear people should ideally live in their communities. The lack of a firm directive allows many states to duck around what some disabled people see as a civil rights mandate: For those who would prefer to live in institutions, they should remain an option, but for those who do not, living in the community shouldn’t have to be a fight with state agencies for funding and support. In 1999, a U.S. Supreme Court case, Olmstead v L.C., reinforced the right to access community-based services. The justices found that forcing people into institutions against their will could be considered discrimination under the ADA’s stated preference for community-based living when possible. If someone’s needs can be accommodated in the community, they wish to leave institutions, and their care providers indicate that it’s suitable, disabled people must be housed in their communities, according to Olmstead.

In 2010, the subject was addressed again in the Affordable Care Act with the Community First Choice plan option, which offered additional funding to states interested in expanding supports to Medicaid beneficiaries. Such a funding change  provided more money for states that opted in, to distribute to disabled residents who need help paying for aides, nurses, and other community-based services. Only a handful of states took advantage of the increased federal funding, highlighting the fact that deinstitutionalization still remains off the radar in many state governments. This is somewhat surprising for budget-conscious states, given the research on the cost of offering such services.

Three years later, the U.S. Senate’s Health, Education, Labor, and Pensions Committee found that the United States was not living up to the expectation that disabled people should be allowed to live in their communities, instead of languishing in institutions. The committee argued, as in Olmstead, that forcing people into institutions via policy is a form of discrimination.

This is where the DIA comes in. Initially introduced by Sen. Chuck Schumer (D-NY) in the previous congressional session, it would require states and insurance providers offering long-term support services to provide access to community-based living first, and to regularly make institutionalized people aware of their options. The bill bans the use of waiting lists, caps, and other barriers used to force people into institutions, and stipulates that governing structures would need to expand access to affordable and accessible housing to ensure that sufficient accommodation would be available to meet the needs of the disabled population.

This is a radical bill because it establishes a flat, clear mandate. Disabled people, the DIA argues, belong in their communities, and we should be concentrating resources to ensure that people can access the level of support they need to thrive. Like the ADA, the DIA could be enforced through lawsuits, whether from the U.S. attorney general (though should Sen. Jeff Sessions (R-AL) be confirmed, he might not pursue civil rights as aggressively as the Obama-era Department of Justice did) or individuals. But the clarity of direction under the DIA makes it much easier to pursue suits—there’s no longer as much ambiguity about whether entities are behaving in a discriminatory fashion.

While references to independent living made it into the Democratic Party platform in 2016, this isn’t entirely a Democratic bill. Rep. Christopher Gibson, who introduced the House version of the bill last session, is also from New York and a Republican. An additional House Republican, Rep. Jim Sensenbrenner (WI), has supported the bill, as has Sen. Bernie Sanders, an Independent who typically caucuses with the Democrats. It will need more robust bipartisan sponsorship to succeed, given the makeup of the incoming Congress, but notably, Republicans have been open to discussions about disability rights in the past—the ADA, after all, was signed into law by President George H. W. Bush. The only way for the DIA to forge a path ahead in the upcoming legislative sessions is for much more aggressive bipartisan outreach and cooperation, as Democrats cannot pass the bill without help, let alone succeed in an attempted veto override if it comes to that.

Before Congress adjourned, the Disability Integration Act spent its time languishing away in committee as advocacy groups lobbied lawmakers to sign on as co-sponsors. A new Congress will be convening on January 3, forcing the whole process to start over again. With a Republican majority in Congress and a less disability-friendly administration in the White House, it could very difficult to enact—particularly since the president-elect has indicated opposition to the DIA. Republicans are riding high on a perceived mandate from the public that includes decentralizing the provision of services and reducing government oversight, and a bill that appears to go against that legislative priority isn’t going to be popular.

It would, however, also be worth it. As of 2009, more than one million disabled people across the United States needed support services, whether delivered in their own homes, group-based settings, or institutions. With an aging population, the number of people who need long-term support services is only going to increase, and the nation should be ready.

Dec 19, 2016, 12:29pm s.e. smith https://rewire.news/

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Celebrating Our Strides to Create a More Inclusive Federal Workforce

Under President Obama, the federal government has hired more than 154,000 permanent and temporary employees with disabilities.

Watch the White House National Disability Employment Awareness Month Event Opening Session.

The White House hosted its final National Disability Employment Awareness Month event Thursday and celebrated the strides we have made to create a more inclusive federal workforce. I'm proud to announce important progress toward that effort.

In 2010, President Obama challenged the federal government to hire 100,000 people with disabilities within five years. Not only did we reach the goal between 2011 and 2015, we surpassed it. Since then, the federal government has hired more than 154,000 permanent and temporary employees with disabilities, and more than 109,000 of whom are permanent hires.

Thanks to the dedicated efforts of leadership, managers, and staff in agencies big and small to commit to inclusive recruitment, hiring, and retention practices, there are now more people with disabilities in the federal workforce than at any time in the past 35 years. This shows what government can do when agencies come together to make sure that everyone in our country has a fair shot -- not only to achieve their dreams, but to serve the country we all love.

Everyone benefits when our government reflects the full talents and diversity of the American people, so the fulfillment of the President's goals marks an important step forward.

With that said, it is just one step toward creating a truly inclusive workforce that represents the American people.

We must all continue to work together -- the federal government, and state and local governments, together with the private and not for profit sectors -- to ensure that the only limits to people’s success are the limits they place on themselves -- not an inaccessible job posting, discriminatory hiring practices, or a lack of workplace accommodations. We have a lot more work to do, so I challenge you to take a fresh look at all of your workplace’s practices and procedures and make sure they are inclusive of working families, people with criminal records who have earned second chances, and others who experience barriers to employment.

Valerie Jarrett
Valerie Jarrett
The kind of progress we want to see starts with us.
Senior Advisor and Assistant to the President for Intergovernmental Affairs and Public Engagement

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Fellowship Grants Awarded to Three Goodwin College Students

Goodwin College

Thanks to a grant focused on encouraging professional development for individuals from diverse backgrounds in human services, three Goodwin College students will have a rare — and challenging — educational experience that can profoundly shape their careers and benefit the clients with whom they will work.

The source of this unique opportunity comes from a grant that the University of Connecticut University Center for Excellence in Developmental Disabilities (UCONN UCEDD) received from the U.S. Department of Health and Human Services, Administration For Community Living, Administration on Disability (AOD) Excellence in Developmental Disabilities National Training Initiative. The funds support the recruitment and retention of trainees from culturally and linguistically diverse backgrounds to participate in a fellowship experience at the UCONN UCEDD in Farmington, Connecticut.

Among other requirements, eligible applicants must come from culturally, racially, or linguistic minority backgrounds; be in the last year of the Human Services bachelor’s degree program with a minimum GPA of 3.2; and plan to pursue a graduate degree. They must attend 90 hours of UCEDD training sessions and complete 80 hours of practicum work connecting their classroom learning with real-life experience in such settings as the Yale Study Child Center and Connecticut Children’s Medical Center Pulmonary Clinic.

In addition, they are required to participate on a UCEDD research team to gain experience in data collection and problem solving; complete a community-based capstone project addressing the needs of people with disabilities; and engage in mentorship with a UCEDD diversity mentor to assess their progress.

Dr. Mary Beth Bruder, Professor of Pediatrics and Director of the A.J. Pappanikou Center for Excellence in Developmental Disabilities Research, Education, and Service, learned of the grant opportunity and consulted with Diana J. LaRocco, Department Chair for Social and Educational Sciences at Goodwin College. Bruder and LaRocco’s professional association began in the 1980’s at the then Pediatric Research and Training Center.

The two colleagues agreed that there would likely be perfect candidates for the fellowships among Goodwin’s Human Services students. With a letter of support from LaRocco, Bruder applied for the government grant. After notification that the application was successful, LaRocco began working with Jack Matthews, Human Services Program Director, on conceptualizing how they would recruit Goodwin students and what the structure might look like.

Ultimately three Goodwin College Human Services students were identified as candidates, vetted, and accepted into the program. The grant will provide each of them a fellowship of 10 hours a week for 36 weeks. Fellows will receive a stipend for their participation. The recipients are:

Audrey Brown of Manchester is currently employed in the field of phlebotomy by Clinical Laboratory Partners. She is a 2015 graduate of Goodwin’s associate program in Human Services and is now continuing on with studies for her bachelor’s degree.

Ann Ferriera of Manchester received her associate degree in Human Services from Goodwin in 2015 and is currently pursuing her bachelor’s degree in the same program. She has been named to the President’s and Dean’s Lists multiple times. Her goal in Human Services is to work with adolescents and young adults.

Sancharae Kelley of Windsor became a certified nursing assistant in 2009 and is currently enrolled in the Human Service bachelor’s degree program at Goodwin. “Being selected for the UCONN UCEDD fellowship is an amazing opportunity, as I plan to further my education by exploring different options,” Kelley says. “I enjoy providing services to any individuals in need; that is why I decided to obtain a degree in human services. My mission to every new challenge that presents itself is not to be simply average but to be phenomenal!”

In addition to the individual benefits to Brown, Ferriera, and Kelley, LaRocco sees the fellowships as a major milestone for the College. “This project is unlike any other at Goodwin to date. Among other unique opportunities, the fellows will engage in research and learning with UCONN master’s and doctoral level students through the Leadership Education in Neurodevelopmental and Related Disabilities (LEND), a federally funded interdisciplinary leadership training program,” she explains. “The UCONN UCEDD has an excellent national reputation for its work in early childhood special education, and the fellows will meet with and learn from national experts in the field.”

Learn more about the Human Services degree programs at Goodwin College.

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Connecticut Partners in Policymaking 2017

U.S. House & Senate Candidates Forum on Disability Issues

U.S. House & Senate Candidates Forum on Disability Issues View the online video from the U.S. House & Senate Candidates Forum on Disability Issues held on October 5th 2016.

We Have A Voice PSA


Training Schedule and Application - Deadline for Applications is Wednesday January 4, 2017

A Project of: The Connecticut Council on Developmental Disabilities
In Partnership With: The Office of Protection and Advocacy for People with Disabilities and The A.J. Pappanikou Center for Excellence in Developmental Disabilities.

Who Should Apply?

  • Parents and family members of children with disabilities
  • Individuals with disabilities

Participants should be able to actively participate in training and discussion and complete an independent advocacy project. Thirty participants will be chosen. One half of the participants will be parents or family members of children with disabilities and one half will be individuals with disabilities.

How Do I Apply?

Complete BOTH SIDES of the attached application form.

Sign and return the application to:
Cathy Adamczyk, Disability Policy Specialist
CT Council on Developmental Disabilities
460 Capitol Avenue
Hartford, CT 06106
PHONE 860.418.6160 FAX 860.418.6184

If you need assistance completing the application contact:
Cathy Adamczyk 860.418.6160 or Donna Devin 860.418.8737

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Application Flyer

A Disabled Life Is a Life Worth Living

Dadu Shin illustration

In midsummer, I learned of the death of Laurie Hoirup, a prominent 60-year-old disability rights advocate in California. Laurie drowned in the Sacramento River after a July 4 celebration. She was well-loved and accomplished. She’d served as a chief deputy director of the State Council on Developmental Disabilities for five years and wrote books about living with a disability.

Laurie’s sudden and tragic death was not directly caused by her S.M.A., but it is a stark reminder of the vulnerability of disabled lives. She was deboarding a pleasure boat when the ramp to the dock shifted. The weight of her motorized wheelchair — and the fact that she was strapped into it — pulled her down into the water too rapidly for rescue.

Laurie’s death had extra significance for me, a 53-year-old husband and father of two, in part because we shared a diagnosis: spinal muscular atrophy.

S.M.A. is a congenital and progressive neuromuscular weakness akin to muscular dystrophy. Until recently, half the babies born with it would die before their second birthdays. Their hearts and lungs became too weak to continue. Medical care and understanding have improved the odds somewhat.

I initially manifested symptoms at about 6 months. I was unable to sit up, and doctors promptly called me a “floppy baby.” I never walked or stood on my own. At the time, S.M.A. was all but unheard of and nearly impossible to diagnose. Now it’s estimated to occur in one of every 6,000 to 10,000 births worldwide.

It’s not generally acceptable in my segment of the disability community to harp on our defenselessness. Rather, the idea is to assert core competencies, to distance ourselves from the Jerry’s Kids’ model and anything else remotely pitiful. We seek fair treatment, rightful access to everything in society — jobs, romantic prospects, and so on. Highlighting the downside of disabilities seems counterproductive and self-pitying.

But the truth is, to live with a disability is to know an abiding sense of fragility. That isn’t always easy, but it’s not necessarily all bad either.

I decided long ago that if I’m going to like myself, I have to like the disability that has contributed to who I am. Today, my encroaching decrepitude is frequently a source of emotional strength, a motivator to keep fighting, to exercise my full abilities in whatever way possible. Let’s face it, people with disabilities are nothing if not first-class problem-solvers. We find all manner of devices to enable us to raise a fork, drive a car or van, go to the beach. I now control my electric wheelchair with my lips, because my hands no longer function. These very words are being written with a voice-recognition computer.

True, it is a hassle having to devise alternative methods for living a normal life. But when it works, Oh, how good it feels! How triumphant and liberating! I’m proud of my persistence and creative coping skills.

Of course at times I grow despondent. I fall into what I call “useless cripple syndrome.” Most of my able-bodied contemporaries are at the pinnacle of their careers, and I’m just getting by. I shouldn’t complain, I tell myself. Unemployment among disabled people is crushingly high.

Because of this, I feel positively driven to make good use of every day that I’m not stuck in bed with a respiratory infection or other ailment. Yes, that may make me an overachiever. I graduated cum laude from Harvard at 21. I became a financial journalist, and my essays have been featured in major publications, including this one. My second book will be published next year. I don’t say all this to boast. The point is, I want to accomplish everything I can while I still have the ability. I may feel fine today, but I can’t count on tomorrow — or even an hour from now. I’ve seen too many friends in the disability community perish too young.

Not long after the shock of Laurie’s fatal accident, the news came of a 14-year-old Wisconsin girl with S.M.A., Jerika Bolen, who was planning to end her own life by refusing life-sustaining treatment. Just a few weeks ago, she did, and died. News reports said that Jerika was comforted by the promise of an afterlife in which she would be able to move freely and escape her persistent physical pain.

My reaction to this is strong and difficult to express. Growing up with a disability, I often became isolated. Feeling devalued by my peers, with no confidence in my future, I experienced intermittent but profound depression. One can take only so many surgeries, so many bodily betrayals, so much rejection, before wanting to give up. Even today, I can pivot from utter terror over an itch I can’t scratch or a bite of food I can’t quite swallow, to almost unbelievable joy if I manage to clear my throat unassisted or zoom my motorized wheelchair through a crowded street. As disabled people, we are endlessly buffeted by circumstances beyond our control.

I dare not judge Jerika Bolen. I don’t know the entirety of her situation. But I do wish she had found the will to live. I’m saddened — as were many others with S.M.A, and some disability rights groups — to think others might grow so weary or apprehensive that they follow her example. I hope she received the same level of intervention any other suicidal 14-year-old would. I wish I could have told her about the psychological alchemy that can turn frustration into an internal fuel. If I’d had the chance I would have told her that society needs its disabled people, too.

The perseverance to live fully with a profound disability comes, I think, in part from honestly facing your own powerlessness and frailty, and recognizing how much worse things have been and could still be. This can instill a delight in the now. In living with a disability, you’ve already dealt with much of what other people fear most, and if you come out on the other side you are, by definition, a survivor. The resolve required, and begrudging acceptance of what you can’t change, may bring a kind of wisdom.

I realize that external conditions can make all the difference. My family has given me unflagging support. My parents fought to get me integrated into regular schools, long before it was mandated, and insisted I could become anything I wanted when I grew up. Today, my family’s financial backing allows me to hire the full-time aides I need to live a productive life. My wife provides for my personal maintenance whenever paid staff isn’t available. Without all this, I would not be where I am today, but I’d like to think I’d find a way to survive.

Laurie Hoirup lived a full, active life. I wish I could have persuaded Jerika Bolen and others like her to keep striving to do the same, not to put her hopes and dreams into the idea of a heaven of unfettered athleticism. I wish I could have convinced her that she wasn’t better off dead than disabled.

Ben Mattlin is the author of the memoir “Miracle Boy Grows Up.”

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Hillary Clinton Outlines Vision of More Job Opportunities for People With Disabilities

Clinton job opportunities
Hillary Clinton called for more job opportunities for the disabled in a speech in Orlando, Fla., saying, “We’ve got to build an inclusive economy that welcomes people with disabilities.” By THE ASSOCIATED PRESS on Publish Date September 21, 2016. Photo by Stephen Crowley/The New York Times.



ORLANDO, Fla. — Of all the attacks that Hillary Clinton and her fellow Democrats have tried against Donald J. Trump since he captured the Republican presidential nomination, one has stood out for its emotional force and persuasive power: No one, it seems, can abide Mr. Trump’s mockery last year of a reporter’s physical disability.

And as Mrs. Clinton strains to make a more affirmative case for her own candidacy, after a summer focused largely on hammering Mr. Trump, her campaign believes that a focus on an often-overlooked constituency — voters with disabilities — can accomplish both goals at once.

On Wednesday, without mentioning the Trump episode, Mrs. Clinton discussed her vision for an “inclusive economy” with expanded job opportunities for what she called “a group of Americans who are, too often, invisible, overlooked and undervalued — who have so much to offer, but are given far too few chances to prove it.

“That’s been true for a long time,” she said, “and we have to change it.”

In keeping with a recent campaign theme, she described how her career had informed her policy goals, from her work for people with disabilities during her time at the Children’s Defense Fund to her tenure as secretary of state, when she appointed the first special adviser for international disability rights.

“Whether they can participate in our economy and lead rich, full lives that are as healthy and productive as possible is a reflection on us as a country,” she said in a gymnasium at a youth center here.

Though Mrs. Clinton made no mention of the moment last year when Mr. Trump mocked a New York Times reporter, Serge F. Kovaleski, who has a congenital joint condition that visibly limits the flexibility in his arms, she may not have had to: The episode has earned Mr. Trump some of his most blistering ratings in focus groups, and a pro-Clinton “super PAC” made it the centerpiece of an ad in June. (Mr. Trump has denied that he was mocking the reporter’s appearance, saying he did not even recall meeting him.)

Mrs. Clinton’s campaign plainly views the contrast as critical to its strategy for the remainder of the race, including the highly anticipated first debate with Mr. Trump on Monday. Mrs. Clinton has said often that she can handle the personal insults from him, but that what gets her piqued are attacks on groups that Mr. Trump has appeared to bully.

And she is in good company. “Making fun of that reporter was just not only in bad taste, it just demonstrated the character of him,” said Christine Griffin, a lawyer and disability policy advocate in Boston. “The disability community is very upset by that, but if you look at the poll numbers, so is the rest of society.”

Mrs. Clinton’s team did not entirely hold its fire on Wednesday. Hours after she left the stage, her campaign held a conference call in which supporters condemned Mr. Trump’s mocking of Mr. Kovaleski. “You’d have to go back 50 years or more to find someone who would actually think that way,” said Tom Harkin, the former Iowa senator who introduced the Americans With Disabilities Act of 1990.

The campaign also featured the infamous clip of Mr. Trump in a new ad starring Anastasia Somoza, a disability rights advocate who was born with cerebral palsy and has known Mrs. Clinton since she was 9.

People with disabilities make up a potentially potent political coalition: A study this month from two Rutgers professors projected that more than 35 million people with disabilities would be eligible to vote this year — roughly one-sixth of the electorate. More than a quarter of the electorate either has a disability or shares a household with someone who does, the study estimated. And they are represented fairly equally in both parties. As the Republican vice-presidential nominee in 2008, Gov. Sarah Palin of Alaska spoke often of championing children with special needs, noting her own child with Down syndrome.

Jennifer Laszlo Mizrahi, the president of RespectAbility, an advocacy group, said the election had focused attention on issues affecting disabled voters as never before, with Mr. Trump’s behavior serving as a galvanizing force.

“I don’t think there’s a person with a disability on the planet who has never been made fun of,” said Ms. Mizrahi, who has dyslexia and is raising a child with physical disabilities. “Every person with a disability knows what it’s like to live with stigma.”

Ms. Mizrahi also lamented that Mr. Trump had often “conflated the word ‘stupid’ with the word ‘loser,’ ” as she put it, warning that such thinking could hinder the job prospects of people with intellectual disabilities.

On Wednesday, Mrs. Clinton did not go there, infusing her half-hour address with the earnest zeal that she tends to summon more readily during policy speeches than in campaign rallies.

She ticked off statistics, noting that nearly one in five Americans lives with a disability, and strayed from her prepared remarks — “I want you to hear this because this is not well known,” she interjected at one point — to urge people to listen.

She spoke of her own policy agenda for people with disabilities, which includes a program aimed at helping people with autism and a pledge to eliminate the “subminimum wage” paid to some people with disabilities, which she called “a vestige from an ugly, ignorant past.”

Mrs. Clinton said she had taken to carrying a copy of a recent article in The Boston Globe that detailed the successful three-decade career of a McDonald’s employee with Down syndrome.

And she described what she viewed as the “ultimate test” of a society: “how we treat our fellow human beings, especially the most vulnerable among us.”

The closest she came to mentioning Mr. Trump was at the end, when she repeated a common campaign refrain: “Love trumps hate.”

Solidifying the disabled as a voting bloc may require extra diligence, given issues of accessibility at many polling places. The Help America Vote Act of 2002 sought to remove impediments, but advocates say many barriers remain. The National Disabilities Rights Network, for one, seeks to inspect polling locations in advance, but many are not open until Election Day, making that impossible.

Until then, Mrs. Clinton seems likely to return to the theme often. Some of her most affecting moments on the campaign trail have come when people have approached her on rope lines or during round-table discussions about their struggles caring for disabled family members, and she has often turned to the subject spontaneously.

The crowd on Wednesday appeared grateful for the consistent attention.

In lieu of a sign, Geannie Bastian, 35, who uses a wheelchair, held up her college degree, saying it represented Mrs. Clinton’s commitment to improving educational opportunities for disabled people.

She said Mrs. Clinton was wise not to discuss Mr. Trump in the room. Everyone, she said, knew his record well.

“I know what that gesture is,” she said, recalling Mr. Trump’s imitation of Mr. Kovaleski. “I’ve had kids do this my entire life.”

Matt Flegenheimer reported from Orlando, and Amy Chozick from New York.

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Becoming Disabled

Dadu Shin

Roughly one in five Americans lives with a disability. So where is our pride movement?

Rosemarie Garland-Thomson AUG. 19, 2016 http://www.nytimes.com/2016/08/21/opinion/sunday/becoming-disabled.html

Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed.

I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.

My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys.”

This impulse to rescue people with disabilities from a discredited identity, while usually well meaning, is decidedly at odds with the various pride movements we’ve come to know in recent decades. Slogans like “Black Is Beautiful” and “We’re Here, We’re Queer, Get Used to It!” became transformative taunts for generations of people schooled in the self-loathing of racism, sexism and heterosexism. Pride movements were the psycho-emotional equivalents of the anti-discrimination and desegregation laws that asserted the rights of full citizenship to women, gay people, racial minorities and other groups. More recently, the Black Lives Matter and the L.G.B.T. rights movement have also taken hold.

Yet pride movements for people with disabilities — like Crip Power or Mad Pride — have not gained the same sort of traction in the American consciousness. Why? One answer is that we have a much clearer collective notion of what it means to be a woman or an African-American, gay or transgender person than we do of what it means to be disabled.

A person without a disability may recognize someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don’t conceptualize these people as having a shared social identity and a political status. “They” merely seem to be people to whom something unfortunate has happened, for whom something has gone terribly wrong. The one thing most people do know about being disabled is that they don’t want to be that.

Yet disability is everywhere once you start noticing it. A simple awareness of who we are sharing our public spaces with can be revelatory. Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere, when they were in fact there all the time.

A mother of a 2-year-old boy with dwarfism who had begun attending Little People of America events summed this up when she said to me with stunned wonder, “There are a lot of them!” Until this beloved child unexpectedly entered her family, she had no idea that achondroplasia is the most common form of short stature or that most people with the condition have average-size parents. More important, she probably did not know how to request the accommodations, access the services, enter the communities or use the laws that he needs to make his way through life. But because he is hers and she loves him, she will learn a lot about disability.

The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.

The World Health Organization defines disability as an umbrella term that encompasses impairments, activity limitations and participation restrictions that reflect the complex interaction between “features of a person’s body and features of the society in which he or she lives.” The Americans With Disabilities Act tells us that disability is “a physical or mental impairment that substantially limits one or more major life activities.”

Obviously, this category is broad and constantly shifting, so exact statistics are hard to come by, but the data from our most reliable sources is surprising. The Centers for Disease Control and Prevention estimates that one in five adults in the United States is living with a disability. The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States, and as new disability categories such as neurodiversity, psychiatric disabilities, disabilities of aging and learning disabilities emerge and grow, so does that percentage.

Disability growth areas — if you will — include diagnostic categories such as depression, anxiety disorders, anorexia, cancers, traumatic brain injuries, attention-deficit disorder, autoimmune disease, spinal cord injuries, autistic spectrum disabilities and dementia. Meanwhile, whole categories of disability and populations of people with certain disabilities have vanished or diminished significantly in the 20th century with improved public health measures, disease prevention and increased public safety.

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