July 30, 2012

Counting People with Disabilities

Categories: Community Life By Guest Blogger Matthew Brault, Statistician, Health and Disability Statistics Branch, U.S. Census Bureau
As most visitors to this blog are aware, the signing of the Americans with Disabilities Act on July 26, 1990 represented a major milestone. The law guaranteed equal opportunity for people with disabilities in public accommodations, commercial facilities, employment, transportation, state and local government services and telecommunications. A common question, however, that still pops up during discussions of disability policy is, “How many people with disabilities are there in the United States?”

Coinciding with the 22^nd anniversary of the ADA, the Census Bureau released a new report – Americans With Disabilities: 2010 – that presented a new look at the prevalence of a wide range of specific disabilities, the degree of severity and the well-being of the population with disabilities. The report showed the number of people with disabilities increasing over the previous five years to 56.7 million people in 2010 (54.4 million in 2005), while the proportion of the population with a disability remaining unchanged at 18.7 percent of the civilian noninstitutionalized population.
The Americans With Disabilities: 2010 report also shows the prevalence of specific disability types.  For instance, about 8 million adults had difficulty seeing; 9 million adults had difficulty with an activity of daily living (ADL); and 4 million adults had a learning disability. Furthermore, disability is often co-occurring with around 11 million individuals experiencing both physical and mental disabilities.
Measuring disability in surveys, however, is not an easy task and different surveys can generate very different estimates of the size of this population. “With a disability” in one study may not be the same as “with a disability” in another. Depending on the definition used, the context of the questions or methods in which the data are collected, estimates of the size of the population with disabilities have ranged from 22 million (from the American Housing Survey) to 62 million (from the National Health Interview Survey).
The Census Bureau report’s estimate of 56.7 million people with disabilities come from the Survey of Income and Program Participation (SIPP), which uses a comprehensive set of disability questions assessing difficulty on a number of dimensions including communication, physical and mental functions.
Disability statistics from this survey are used by agencies — such as the Social Security Administration, Centers for Medicare and Medicaid Services and the Administration on Aging — to assist with program planning and management. The SIPP measure has been the primary statistic for estimating the size of the population with disabilities since the early 1990s.
Disability and functioning are continuums ranging from “able to do most or all basic activities with little or no difficulty or help from technology or another person” to “completely unable to do most or all basic activities, even with assistive technology or other aids.” Under this gradient, most people fall somewhere in between. We use categories like “with a disability” and “with no disability” to make it easier to describe the population, even though the threshold for how much difficulty constitutes a disability may not be clear.
Perhaps some of the difficulty in defining disability along this continuum is also found in the issue of choosing which activities should be included in the disability measure.  The American Community Survey (ACS) – a great survey for looking at the social, economic and housing characteristics of subnational geographies like states, counties and metropolitan areas – uses questions on six specific types of disability. With fewer dimensions of disability, the ACS shows a smaller number of people with disabilities (36 million, or 12 percent), but provides statistics at more localized levels.
Researchers, advocates and policymakers should be aware of the reasons for the different estimates of the number of people with disabilities in the U.S.  No one survey estimate is “right” or “wrong” as all surveys must make choices about the type and nature of disability they intend to measure. With the SIPP’s comprehensive set of questions on various disabilities, the Census Bureau (and many across the federal government) have used Americans with Disabilities report estimates, like the current estimate of 56.7 million people with disabilities, and so it is widely accepted as the measure of the size of this population.
For presentation slides and more information from a July 27, 2012 C-SPAN segment on the Americans With Disabilities report, visit http://www.census.gov/newsroom/cspan/disability/.
Matthew W. Brault is a statistician with the Health and Disability Statistics Branch in the Social, Economic and Housing Statistics Division of the U.S. Census Bureau. For the past seven years, he has studied the social and economic characteristics of people with disabilities in the United States, including the prevalence of disability across geographies and population subgroups. He has written several reports and papers about this population — including the recently released “Americans With Disabilities: 2010″ — using data from the Survey of Income and Program Participation and the American Community Survey. Brault received a bachelor’s degree in sociology from George Washington University and is currently pursuing a master’s degree in public policy from Georgetown University.

July 27, 2012

The Need for Oral Health Care at Safety Net Clinics

Categories: Health

By Guest Blogger Michelle Vacha, RDH, BS, Founder, Senior Mobile Dental
Oral health is an important part of overall good health. However, many people in this country are not receiving proper dental care because they do not have dental insurance and therefore can’t afford treatment.
Oral disease is associated with pain as well as speech, behavior and self-esteem problems in children. Untreated dental caries (the disease process that causes cavities) is the most common disease in children, occurring five times more often than asthma, according to the American Academy of Pediatrics. In adults and seniors, poor oral health is associated with chronic diseases such as diabetes and cardiovascular and pulmonary disease.
Studies have shown that having insurance coverage directly impacts whether people receive health or dental care or not. Children who are uninsured, for example, are more likely to have unmet dental needs. However, many child and adults throughtout the U.S. do not have dental insurance.
I live in Colorado, where only 56 percent of adults aged 18 and older have dental insurance coverage, according to the 2011 Colorado Health Access Survey. This study also found that nearly half (47 percent) of the uninsured Coloradans surveyed reported that they did not receive needed dental care because of the high cost associated with it.
While this survey may only report findings from Colorado, it is a good basis for what is happening across the country.
Most people get dental insurance through their employers. However, throughout the last 20 years, the percentage of employers offering dental insurance as a benefit has decreased nationwide. For those employers still offering dental insurance, often the employee pays the full premium. As a result, a significant portion of dental care is paid for out-of-pocket.
The 2008 Colorado Household Survey found that, “Although poor and minority adults experience greater levels of dental disease, they frequently face cost and other system-level barriers to obtaining dental care.”
Adults are eligible for Medicare health insurance at age 65. However, Medicare does not offer dental benefits, resulting in more than 60 percent of seniors not having dental insurance coverage.  Many seniors are on fixed incomes that prohibit high out-of-pocket expenses for dental treatment.
It is well known that prevention is critical when it comes to health care, and this includes oral health care. However, many adults and children in Colorado are not receiving preventative dental care because of the cost associated with it. Colorado ranks 38th among the 50 states in the number of children receiving preventive dental visits in the previous year. Nationwide, more than 16 million children each year go without seeing a dentist.
The successes in products and developments, such as fluoride, power tooth brushes, etc., have allowed people to maintain their oral health and retain their teeth. These are all preventive measures. Yet Medicaid and Medicare do not cover preventive oral health care over the age of 18.
How much money is spent in medical costs that have contributing factors stemming from poor oral health? Conclusive research indicates relationships between cardiovascular disease, pneumonia, low birth weight, diabetes – to name a few. Lack of dental care also puts a strain on emergency rooms. A report by the Pew Center on the States estimates that more than 830,000 visits to emergency rooms in 2009 were the result of preventable dental conditions (this represents a 16 percent increase from 2006).
Senior Mobile Dental (SMD), a nonprofit organization I founded, believes no elderly or person with a disability should live their life in pain that is controllable. Every day we see vulnerable adults in advanced disease and neglect, because they cannot afford or get to a dentist.
Even though SMD’s focus is on elder and adult care, these findings and concepts span all vulnerable age groups. SMD was founded to address the two key barriers vulnerable people face in receiving professional dental care: transportation and financial costs. SMD brings professional preventive oral health care directly to where this population lives or congregates. Disease findings are then reported and referred to dentists for treatment. Funding helps provide services and identify pain and infection for those with no financial resources.
As a federally qualified 501c3 nonprofit organization, we have overcome the access to care issues this population faces. Our mobile concept for in-house care is an innovative solution to the cost, liabilities and inefficiency of transporting to a dental office or motor home type delivery.
Children’s programs have been successfully implemented within community based programs and school systems, yet the adult population is left with no resources for care. After retirement, many people are on a fixed income and are faced with the choices of using their money to pay for utilities or medications, for example, or continuing their preventive oral health care needs. With the high cost of dental services, most have let their oral health fall to a lower priority of needs, which then predisposed them to advancing, uncontrolled oral disease.
Research and tracking of uncontrolled oral disease and its relation to chronic disease needs to happen in order to institute the needed change for coverage and necessary collaborative care between medical and dental professionals. The successful approach Senior Mobile Dental has used to address the lack of access to dental care this vulnerable population faces is a simple solution to begin the process for inclusion and change, and can be replicated by other organizations.
For more information:
To find out more about Senior Mobile Dentistry, visit http://seniormobiledental.org/. For more information on help for children in Colorado who need dental care, visit Kids in Need of Dentistry (KIND).
ACKNOWLEDGMENTS
The Colorado Household Survey is funded by The Colorado Trust. Analysis of the data and preparation of the figures contained in this report are provided by the Colorado Health Institute.
Michelle Noblet-Vacha RDH, BS, is the founder & executive director of Senior Mobile Dental, a nonprofit charity based in Colorado Springs, and focused on providing senior citizens with access to professional oral hygiene care. Michelle founded Senior Mobile Dental in 2006 after experiencing firsthand the nation’s “oral health crisis” among a growing-yet-neglected population of senior citizens. Since founding the organization, she has received 13 national awards and recognition in paving a pathway to increase access to care for the vulnerable elderly citizens of our nation.

Source: http://usodep.blogs.govdelivery.com/2012/07/27/the-need-for-oral-health-care-at-safety-net-clinics/

Disability History from the Presidential Libraries

Categories: Civil Rights, Community Life By Susan K. Donius, Director of the Office of Presidential Libraries, U.S. National Archives

This year marks the 22^nd anniversary of the Americans with Disabilities Act (ADA). In 1990, President George H.W. Bush signed the Act into law on the White House South Lawn in front of an audience of 3,000 people. On that day, America became the first country to adopt a comprehensive civil rights declaration for people with disabilities.
The ADA was a landmark moment in history, designed to provide universal accessibility in the areas of employment, public service, public accommodations and telecommunications. As President Barack Obama noted in 2009 at the signing of the U.N. Convention on the Rights of Persons with Disabilities Proclamation, the ADA “was a formal acknowledgment that Americans with disabilities are Americans first, and they are entitled to the same rights and freedoms as everybody else: a right to belong and participate fully in the American experience; a right to dignity and respect in the workplace and beyond; the freedom to make of our lives what we will.”

Among the holdings of the Presidential Libraries of the National Archives are many letters, meeting notes, photos and White House memos that document the collaborative process of creating the ADA. The Presidential Libraries have protected and shared the records of every Presidential administration since 1929, and the history of people with disabilities is woven throughout.
Sierra Gregg is a second year intern in the Office of Presidential Libraries, who recognizes the importance of sharing Presidential records related to disability history. She has been closely involved in a project to make a selection of these documents accessible to a wide audience. The following post is written by Sierra, about the Americans with Disabilities research page that is now available on the National Archives website.
I was born visually impaired one year after the signing of the ADA. I have grown up in a world where my visual impairment is not a hindrance to my success, only a characteristic of who I am. The ADA has made it possible for me to get the help I need to work toward my academic and professional goals.
However, the story of disability civil rights did not start with the ADA and it certainly did not end on that day 22 years ago. The efforts to ensure independence and equality for people with disabilities have a long and fascinating history. Throughout the course of two summer internships, I have worked on the Presidential Libraries team to collect a small sample of records related to Americans with disabilities. This collection will be added to the research topic section of the National Archives’ website and will contain at least one record from every Presidential administration since Herbert Hoover.
Although the collection contains records related to different disabilities, the records directly related to visual impairments are particularly meaningful to me. I believe my favorite record in the collection is a Braille letter written to President Dwight D. Eisenhower in 1956 by then-thirteen-year-old John Beaulieu. I first saw the letter on display in the Public Vaults exhibit of the National Archives in Washington, D.C. I still wish I could read the words with my fingers instead of just listening to the description. I was duly impressed that Beaulieu wrote the letter using a slate and stylus; I never quite mastered the art of using the slate. In order to write using the slate and stylus a thick piece of paper is placed face down in the slate, the stylus is used to punch out dots in the paper. The trick is every letter has to be written backwards so it can be read when the page is flipped.
The collection also contains two letters written to President Herbert Hoover by Helen Keller. She wrote letters to eight U.S. Presidents, starting in 1903 with Theodore Roosevelt. She also personally met 13 Presidents from Grover Cleveland to Lyndon B. Johnson. I must admit to feeling a twinge of envy when I learned that during a visit to the White House, she investigated her historic surroundings with touch. She even identified a bust of George Washington with her fingers.
The Americans with Disabilities research collection currently includes more than 50 different records. They range from Keller’s letters to President Hoover to photos of a White House dinner hosted by President Clinton, honoring the Special Olympics. It’s a resource that will continue to grow, and one that sheds light on an important part of disability, and American, history.

Learn more by visiting the Americans with Disabilities research page from the Presidential Libraries at http://www.archives.gov/research/americans-with-disabilities/.
Susan K. Donius is the Director of the Office of Presidential Libraries at the National Archives and Records Administration.
Sierra Gregg is a senior at Truman State University in Missouri where she is studying computer science. This year, she was awarded a scholarship from the National Federation of the Blind. 

Presidential Proclamation -- Anniversary of the Americans with Disabilities Act, 2012

ANNIVERSARY OF THE AMERICANS WITH DISABILITIES ACT, 2012

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BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
A PROCLAMATION

Since our earliest days, America has measured its progress not only by the growth of our borders and the breadth of our economy, but also by how far we reach toward fully realizing the fundamental rights, protections, and freedoms afforded to each of us by our Nation's founding documents. For generations, many Americans with disabilities lived as second-class citizens who were denied those most basic opportunities. Not content to accept the world as it was, they marched and organized and testified, coupling quiet acts of persistence and perseverance with vocal acts of advocacy. And step by step, progress was won. Protections were put into law. And a wave of change swept across our country, tearing down the barriers that kept persons with disabilities from securing their fullest measure of happiness.
Today, we mark the 22nd anniversary of the Americans with Disabilities Act (ADA) -- a historic piece of civil rights legislation that affirmed Americans with disabilities are Americans first. When many wrongfully doubted that people with disabilities could participate in our society, contribute to our economy, or support their families, the ADA asserted that they could. Under this landmark law, America became the first Nation to comprehensively declare equality for its citizens with disabilities -- an accomplishment that continues to guide our country toward fulfilling its most essential promises not just for some, but for all.
Yet, despite the gains we have made, independence and freedom from discrimination remain out of reach for too many individuals with disabilities. That is why my Administration continues to build on the legacy set forth by the ADA. Thanks to the Affordable Care Act, insurance companies can no longer deny coverage to children with disabilities because of pre-existing conditions, medical history, or genetic information -- a provision that will be extended to all Americans in 2014. We have fought to protect and strengthen Medicare and Medicaid by improving benefits and opposing proposals that would shift costs to seniors and persons with disabilities. And earlier this year, we established the Administration for Community Living at the Department of Health and Human Services to help ensure people with disabilities have the support they need to live with respect and dignity in their communities, and to be fully included in our national life.
Because every American deserves access to a world-class education, we have worked to make learning environments safer and more inclusive. Last September, the Department of Education implemented new standards for the Individuals with Disabilities Education Act that will help measure and improve outcomes for infants and toddlers with disabilities. Moving forward, we will continue to take action to help all children learn, develop, and participate in instructional programs that equip them with the tools for success in school and beyond.
As we mark this milestone and reflect on the barriers that remain, we also pay tribute to the courageous individuals and communities who have made progress possible. Because so many advocates understood injustice from the depths of their own experience, they also knew that by allowing injustice to stand, we were depriving our Nation and our economy of the full talents and contributions of tens of millions of Americans with disabilities. Today, those Americans are leaders not only in every field and throughout every part of our national life, but also in the journey to bring the American dream within reach for our next generation. On this anniversary of the ADA, we celebrate the contributions Americans with disabilities have made to our Nation, and we rededicate ourselves to empowering every individual with those most American principles of equal access and equal opportunity.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim July 26, 2012, the Anniversary of the Americans with Disabilities Act. I encourage Americans across our Nation to celebrate the 22nd anniversary of this civil rights law and the many contributions of individuals with disabilities.
IN WITNESS WHEREOF, I have hereunto set my hand this twenty-sixth day of July, in the year of our Lord two thousand twelve, and of the Independence of the United States of America the two hundred and thirty-seventh.

BARACK OBAMA

July 26, 2012

A More Inclusive America: We Can’t Wait

Categories: Civil Rights, Employment

By Kathleen Martinez, Assistant Secretary of Labor for Disability Employment Policy (Reposted from DOL’s (Work in Progress) Blog)
Today (July 26) marks 22 years since the Americans with Disabilities Act (ADA) was signed into law. Like other pieces of civil rights legislation, this landmark law works to ensure a more inclusive America. Its passage paved the way for millions of Americans to more fully participate in all aspects of community life.
I am one of those millions of people. I was born blind. My sister Peggy was also born blind. We were the middle of six children, and as of yet there is no diagnosis for our blindness.
When Peggy and I were growing up, there was no ADA, and we didn’t know much about the emerging disability rights movement. We were too busy just being kids. But, fortunately, we had parents who understood the importance of inclusion and fought for our rights even before the law backed them up. To start, they advocated for me, and later Peggy, to attend our local public school. This allowed us to be part of, rather than separate from, our community. My parents couldn’t wait for change, so they made it happen.
Today, the ADA enshrines in law what my parents—and many others—already knew: the ideal of equal opportunity holds no water unless it truly includes all people, including people with disabilities.
That said, more than two decades after the ADA was passed, much work remains to be done. And that’s why I do what I do every day. I have the honor of leading DOL’s Office of Disability Employment Policy (ODEP), which works to influence national policy and promote effective workplace practices that ensure today’s workforce is inclusive of all people.
While ODEP does not enforce the ADA, the law underpins all of our work. We assist employers and individuals in understanding their rights and responsibilities through policy development, education and guidance. I sometimes say that we at ODEP are impatient. We want change. We want action. We want inclusion. Just like my parents when I was young, we can’t wait.
We can’t wait for more employers to foster a work environment that is flexible and open to the talents of all qualified individuals. We can’t wait for more businesses to integrate people with disabilities into leadership positions. We can’t wait for a more inclusive America, one where every individual has the opportunity to fully participate in and contribute to our great nation.
Kathy Martinez is the Assistant Secretary of Labor for Disability Employment Policy.

Source: http://usodep.blogs.govdelivery.com/2012/07/26/a-more-inclusive-america-we-cant-wait/

July 25, 2012

Looks Can Be Deceiving

Categories: Community Life

By Guest Blogger Wayne Connell, founder and president of the Invisible Disabilities Association, and Kathe Skinner, Invisible Disabilities Association Advisor
Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?
The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain. We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.
Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.
Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.
Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.
While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.
My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me.  When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.
I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS,  so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”
Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.
Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!
Imagine the moment of deliverance from need.
Then you can imagine how I felt, looking at that car and noticing it had black interior.
Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.
Get in? No way. But did I have any choice? Nope.
Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”
I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.
Bet I didn’t look so good then.
Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.
I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.
Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.
My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.
Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.
IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?
For more information:
To find out more about IDA and the work we do, visit http://www.invisibledisabilities.org/.
Wayne Connell, the founder and president of the Invisible Disabilities Association, established IDA in 1997 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the booklet, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology.
Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years. Find out more about her and what she does at www.BeingHeardNow.com.

July 23, 2012

When Disability Stigma Causes Disability

Categories: Health

By Guest Blogger Peter Kronenberg, Vice President for Communications, the National Association of People with Aids
Thirty-one years ago, the Centers for Disease Control and Prevention reported cases of a new disease we now know as AIDS – Acquired Immune Deficiency Syndrome.
This week, the nineteenth International AIDS Conference meets in Washington, D.C. There’s hope in the air. For the first time, HIV/AIDS scientists, clinicians and policy makers think it may be possible to bring America’s HIV epidemic to an end.
We’ve made remarkable scientific and medical progress against HIV. Three decades after those first cases, we now know what causes AIDS: a previously unknown virus, identified and given the name human immunodeficiency virus, or, more commonly, HIV. We now have medicines that don’t permanently cure the virus, but keep it under control for most people who take their medications as prescribed. Today, people with HIV can lead normally healthy lives with nearly normal life expectancies.
We’ve made epidemiological progress, too. We know today that people whose HIV is fully suppressed are radically less likely to pass their infections on to others. In principle, near-universal testing and treatment could make new HIV infections almost a thing of the past.
And yet new infections keep coming – an estimated 50,000 a year for half a decade now, despite the scientific and epidemiological progress.
Maybe it’s time to start thinking of HIV infection as a disability again, as we did in the years before we had effective medicines.
HIV infection is still a disability because of stigma. All of us who live with disabilities know how quickly stigma follows the perception that we are “different.” School children taunt classmates with motor disabilities. Adults talk to other adults in wheelchairs as if they were five-year-olds.
Living with HIV is a disability like any other in the opportunity it gives others to see us as “different.”
It may be unique, however, in being a disability that is actually caused by stigma.
HIV spreads mostly – let’s be frank – by sexual contact. There are communities in America where talking realistically about sex is deeply taboo. The result is that too many Americans don’t know they are at risk, because they think HIV infection only happens to “those people” – whatever we mean by those people. Too many Americans don’t know that most new HIV infections happen where there are already high numbers of undetected, untreated infections. Too many Americans think you have to be promiscuous or sinful to get infected, and would rather risk dying of untreated HIV than get tested and know for sure that they themselves had just become “those people.”
A majority – possibly as many as three-quarters – of all new HIV infections in this country come from the 20 percent of Americans with HIV who don’t know they are infected. They don’t know because they are afraid to know. We are literally dying of shame.
As the nineteenth International AIDS Conference meets this week in Washington, we expect news of exciting medical breakthroughs. HIV may become fully curable sooner than we ever thought possible.
But the HIV epidemic won’t end until we face down the stigma – the unlovely but basic human impulse to define ourselves up by defining others down – that goes with living with HIV and so many other disabilities.
Get tested. Visit the CDC’s National HIV and STD Testing Resources website to find a testing site near you. Also, visit NAPWA.org for more resources on what to do if you test positive.