November, 2009

Can We Get Married?

November 25th, 2009

BBC’s documentary, “Can We Get Married?” challenges the notion that people with disabilities cannot successfully maintain a committed and loving relationship.  The documentary follows Emma Bishop and Ben Marshall – both are diagnosed with Down’s syndrome – who are very much in love and want to get married.

Emma and Ben live in a quaint community in Devon, UK.  Even though the couple has been together for six years and want to get married, they face obstacles that many of us do not.  Both sets of parents object.  Emma’s mother worries about the finances involved, and the benefits systems poses a problem if Emma and Ben were to marry, even though they live together. 

The thing with having Down’s syndrome is that sometimes you’re not treated like an adult,” explained Emma. “And people don’t listen to what you say.”

“Can We Get Married?” follows Emma and Ben throughout their decision on whether or not to take “the plunge.”  Their mutual respect for each other, devotion and dedication has made for a strong relationship; certainly a recipe for a long and happy marriage.  

“It’s just a bit of paper, getting married,” sighed Emma when she thinks of the road blocks society has put in the way of their getting married.  While true, it means that she may not have the wedding of her dreams.

Hate crimes against people with disabilities remain steady

November 24th, 2009

Last month President Obama signed the expanded hate crimes legislation.  The law made it a federal offense to commit a crime against a person based on their disability.  Under this new law, hate crime protection extends to crimes committed based on a person’s sexual orientation, gender, gender identity or disability in addition to color, race, religion and national origin.

The expansion of the hate crimes legislation brings to light that the number of hate crimes committed against people based on disability has remained steady throughout 2008.

In 2008, the FBI’s Uniform crime Reporting Program stated that of the 9,691 victims of hate crimes, 1% or 85, were targeted based on disability.  Fifty seven were targeted because of mental disability and 28 because of physical disability.

The number of people targeted for hate crimes because of their disability has increased slightly, from 84, since 2007.

To shatter stereotypes we must force people to change

November 23rd, 2009

This op-ed is written by William Peace, author of Badcripple.blogspot.com

Visual Activism is Not Enough

Rosemarie Garland-Thomson is one of the leading figures in disability studies. I respect her scholarship yet find her passivity frustrating in the extreme. She has a new book, Staring: How We Look, that I am using as a required text for my class on disability and anthropology. Staring is thought provoking and by far Garland-Thomson most accessible work to date. Garland-Thomson explores a little discussed subject: why humans stare. In Staring she carefully crafts theoretical arguments with imagery in a way that prompts one to think in a different way. I particularly admire her use of visual images that are directly linked to memoirs, art, popular culture, media representations of disability, and why we stare at certain bodies and body parts. Garland-Thomson six part text ends with a short section entitled “Visual Activism”, a great idea as far as it goes. In short, Garland-Thomson praises people such as Matuschka, a flamboyant model who had breast cancer and changed the way we think about the implications of the disease by exposing her scars thereby commanding others not to look away. Garland-Thomson also points to Harriett McBryde Johnson, a disability activist who debated Peter SInger and found herself on the cover of the New York Times Magazine section. Positioning one’s self in the public eye can be part of claiming an identity that is linked to disability and empowerment. This is fine in theory but does not nearly go far enough to force effective social change, change that will truly lead to equality for all people with a disability. Visual activism is too passive an approach for me. Being out there is not enough because people do not want to change their views with regard to disability. Most people have little or no experience with disability and the little they do know is often wrong. I cannot blame people too much–the media does a horrific job representing people with a disability and the most well known person with a disability in recent years, Christopher Reeve, did nothing to foster the development of disability rights. Indeed, Reeve accepted a medical model of disability, sought out a single goal, cure, and reinforced many dated beliefs about disability.

So what do I suggest in place of visual activism? I think we people with a disability must not only get out in the public, be in the public eye, but be confrontational in a polite but assertive way. When we confront a lack of access we must assert ourselves in way that demonstrates that the issue is not singularly unusual but involves a violation of our civil rights. This is not just wrong but illegal and we cannot be bought off with a $100 voucher from an airline or a free hotel room for the night. This confrontational style can take many forms and dawned on me this summer on a trip to Seattle. Let me provide two example: First, when I was in Seattle I stayed at the Marriott. I booked an accessible room and it had the worst designed bathroom I have ever encountered. The shower had a bench seat that was so far from the shower head the water could not reach any person that sat on the bench. I was able to move to a room that had a functional bathroom but I have not let the issue go. Since the summer I have been in continuous contact with the Marriott and am trying to force them to make the bathroom accessible. I have turned down multiple perks since I complained because I do not want them. What I want is to see is change as in making the the bathroom accessible as advertised. The manager and the Marriott does not understand the point. I am not dropping the issue and cannot be paid off. My complaint is about equality and I hope they will eventually understand this. Second, when in Seattle my son and I spent much time eating and shopping our way through the Pike Street Market. I truly love the seafood for sale and funky nature of the Pike Street Market. I do not like the crowds and grew frustrated when people would often comment “watch out for the wheelchair”. After hearing this inane comment too many times I became more than frustrated. So on our way back to out hotel when I heard “watch out for the wheelchair” a light bulb went off in my head and I turned to my son and repeated the phrase with one modification. The person that stated “watch out for the wheelchair” was a woman wearing black shirt. I mimicked her phrase and voice and told my son “watch out for the woman in the black shirt”. The look of utter confusion on her face was priceless. My son was not only highly amused but we repeated this again and again with consistently interesting results. Since my experiences this summer at Pike Street Market if someone ever states “watch out for the wheelchair” I instantly repeat and modify this phrase.

The point I am trying to emphasize is that direct action is required for being present is simply not enough. Garland-Thomson was on the right track but too passive. We people with a disability must shatter old stereotypes and force people to change. We can do this via direct confrontation that has an edge but is still polite. There is much change that needs to take place and in some ways what I am suggesting reminds me of skiing on busy weekends. When looking down the slope and I see many people below me my brother in law half joked it was a “target rich environment”. When I go out the door and interact with the ignorant bipedal masses of people that surround me I always feel like I am in a “target rich environment”. Being present is fine but being subversive is even better.

CLASS Act will give Americans accesss to affordable long-term supported living services

November 20th, 2009

By Foon Rhee, Boston Globe

The late Senator Edward M. Kennedy’s legacy goes on and on in the health care debate.

The legislation that top Senate Democrat Harry Reid unveiled Wednesday night includes a bill that Kennedy had championed for years. Known as the CLASS (Community Living Assistance Services and Supports) Act, it would give the elderly at least $50 a day for long term care and allow them to stay at home if they want.

“The CLASS Act was immensely important to Senator Kennedy because, as he said, ‘It makes a simple pact with all Americans – if you work hard and contribute, society will take care of you when you fall on hard times.’ The Act gives the elderly and people with disabilities opportunities to continue living at home, function in their communities, and obtain the long-term care and support they need,” Senator Paul G. Kirk Jr., who is carrying the health care baton for Kennedy as his temporary replacement, said in a statement today.

He and other supporters say it would save money in the long run by keeping people off Medicaid, but critics have questioned the cost.

A summary of the proposal, provided by Kirk’s office, is below:

BILL SUMMARY

The Need for the CLASS Act

Long-term supports and services are an area that is not currently affordable or accessible for millions of Americans. Approximately 5 million people under age 65 living in the community have long-term care needs. More than 70,000 workers with severe disabilities in the nation today need daily assistance to maintain their jobs and their independence. Many of these people rely on unpaid family members and friends to provide that care. Demographic trends suggest that these sources of support will be increasingly scarce in the coming decades, and paid assistance will be increasingly needed by people with such disabilities.

It is estimated that 65% of those who are 65 today will spend some time at home in need of long-term care services – which costs on average almost $18,000 per year. Currently one and a half million people are in nursing homes. Approximately 9 million elderly Americans will need help with activities of daily living in the coming year, and by 2030 that number will increase to 14 million.

Contrary to popular belief, Medicare and most private health insurance plans pay for long-term care for only a short period of time. Persons with the most intense needs will frequently exhaust their assets and rely on Medicaid. Under the CLASS Act, a new voluntary long-term care services insurance program will provide a lifetime cash benefit that offers seniors and people with disabilities greater protection against the costs of paying for long term services and support so that they can remain in their homes and communities.

How the Program Works

The CLASS Act offers a voluntary, self-funded program for people who are currently employed. Affordable premiums will be paid through payroll deduction, if an individual’s employer decides to participate in the program. In this case, people who do not wish to participate may opt out of the program. Self-employed people or those whose employers do not offer the benefit will also be able to join the program. Participants must pay premiums for five years and work for three years in order to qualify for benefits.

One of the ways the CLASS Act program is unique is that it relies less on medical underwriting than most private insurance plans. All working Americans can participate in the program. The conditions for qualifying for benefits are the same as those commonly used in private insurance plans – when participants in the program need help with a set number of activities of daily living, they will be assessed and, if eligible, start receiving benefits.

The CLASS Act seeks to empower consumers. Individuals usually know best which services and goods they need to stay independent. Yet they often need help in navigating the complicated health and long term services marketplace. For these reasons the Act provides an average cash benefit of $75 a day, so that participants have the most flexibility to meet their own needs. The actual cash benefit will depend on a person’s level of impairment. Counseling, coordination and advocacy services to facilitate the receipt of high quality services will be available to every beneficiary.

Actuarial Framework

The program stands on its own financial feet. It is not a government entitlement program and it does not affect receipt of or eligibility for other benefits, such as Social Security, SSI or SSDI. If an individual uses Medicaid services, the CLASS benefit will be used to offset part of the cost of community based, residential or nursing home care.

Voluntary long term care insurance poses challenges for establishing a solid financial structure. Early formulations of the CLASS Act raised concerns over its financial viability. Through constructive interaction with the industry and other interested parties, several changes in the program were made to address those concerns. First, spouses are not eligible as dependents, decreasing the amount of adverse selection possible in enrollment. Second, the Secretary of HHS has flexibility in selling premiums to ensure 75 year solvency, and flexibility in setting eligibility requirements to qualify for the cash benefit. Third, premiums are age-rated. Fourth, employment requirements were raised to $4,000 a year for 3 years.

Actuarial modeling has further evaluated potential changes in the program to ensure the program’s solvency. In particular, indexing the premium at even half the rate of the consumer price index leads to an 83% reduction in premiums. The indexing also ensures growth of the premium amount over time, creating a growing reserve fund of unused premiums at the start of the program which will not be tapped until the third decade of the program – at which point advances in care will likely have changed the face of disability in our country.

All told, these changes ensure that the CLASS program is financially viable and self-sustaining long into the future.

The Participation Question

In its modeling assumptions, the Congressional Budget Office assumes a 5% participation rate in the CLASS program, based on current participation rates for private long-term care insurance. However, a number of factors suggest that participation in the program will be substantially higher than 5% – which will further strengthen the financial outlook for the program.

First, the benefit in the CLASS program is a cash benefit, rather than a service-based payment. The ability to flexibly address one’s own needs by purchasing anything from a caregiver’s services to orthotics to a shower chair will make this program more attractive to consumers than traditional long-term care insurance. This choice is expected to translate into higher participation rates.

Second, the program is a lifetime benefit. In contrast, only 4% of group long-term care insurance products and 20% of individual long-term care insurance products have a lifetime benefit. With a lifetime cash benefit, the program will generate increased interest and participation.

Third, the program, unlike private long term care insurance, allows autoenrollment and payroll deductions for premiums. The program maintains its voluntary nature through an employee opt-out, but the autoenrollment feature will increase participation levels above that expected for proactive enrollment, a trend that has been demonstrated with 401(k) plans, and that underlies automatic enrollment in the Federal Employees’ Group Life Insurance plan, where enrollment rates are 84%.

Fourth, government endorsement of the plan can be expected to increase participation. The Long Term Care Partnership Program, for instance, found that people who enrolled in private long term care insurance plans reported that the endorsement of the State was an important factor in the decision to participate.

Long-Term Savings

Beyond being self-supporting and voluntary, the program can be expected to generate long-term savings in Medicaid. The $75 daily benefit is applied towards any Medicaid long term care costs. In addition, the program will help people live independent lives at home and in the community. When people with disabilities get the services they need, they are less likely to enter a nursing home or hospital.

The average $75 daily cash benefit in the program –the equivalent to $27,375 a year – will certainly enable people to purchase services in the community, and delay or avoid more expensive institutional care. In fact, the cash benefit is larger than the average yearly cost of home health services ($18,000). Based on 2008 caregiver prices, $75 a day will purchase 2 ½ hours of daily service from a home health aide, 4 hours of daily service from a homemaker, and cover all of the daily cost of an Adult Day Care Center.

Since the CLASS program is innovative, there is not exact precedent, but there are examples and systematic evidence that demonstrate the ability of community-based services to avoid or delay more expensive care in institutions. One study found that the “Cash and Counseling” program, which provides a cash benefit towards home health services, reduced nursing home use by 18% over 3 years. Another study of expanded home-based and community based services through Medicaid waivers from 1995 to 2005 found that states with high spending on such services under Medicaid had 15 percent less Medicaid spending on nursing home care than states with low spending on such services. As a result, expansion of these services reduced institutional spending, and produced long-term cost savings after the initial investment in establishing these community services.

A major factor driving entry into a nursing home is caregiver stress. Eliminating such stress prevents 73,900 long-staying nursing home admissions over a two year period (roughly one quarter of all long-staying nursing home admissions). Providing a cash benefit under the CLASS program to purchase additional caregiver services can therefore be expected to reduce such admissions.

Consumer-directed benefits such as in the CLASS program have the additional advantage of increasing consumer satisfaction with services. When consumers directly hire their caregivers (as is the case with a cash benefit), both the consumer and the caregiver report higher rates of satisfaction. Home-based care through a consumer-directed approach is therefore a sustainable alternative to institutional care.

For all of these reasons, the CLASS program can be expected to generate long-term savings, while also enabling the growing population of older and disabled citizens to continue enjoying functional lives in their homes and communities.

Rosa’s Law will eliminate hurtful terms

November 18th, 2009

Silver Spring, Maryland – The Arc of the United States (The Arc) supports and applauds today’s introduction of “Rosa’s Law,” a bipartisan bill introduced by U.S. Senators Barbara Mikulski (D-MD) and Michael Enzi (R-WY). Modeled after a recently enacted law in the state of Maryland, this legislation would substitute the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes.

The term “intellectual disability” covers the same population of individuals who were previously diagnosed with the term “mental retardation,” and “mentally retarded.” Therefore, the change in terminology would in no way alter the eligibility requirements for services and supports.  

“This bill is very important for people with intellectual disabilities who understand that language plays a crucial role in how they are perceived and treated in society and are actively advocating for terminology changes in federal and state laws.  ‘Retard,’ ‘retarded’ and ‘retardation,’ once accepted medical terms, are now only used to demean and insult people,” stated Peter V. Berns, Chief Executive Officer, The Arc of the United States (The Arc). “The Arc, believes that changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.”

Read Senator Mikulski’s statement to the U.S. Senate upon introduction of the bill at: http://mikulski.senate.gov/record.cfm?id=319975&.

Woodland survivors seek justice for abuse

November 17th, 2009

By Roxanne Gregory, Straight.com

Although phase one of a class-action lawsuit against the B.C. government is slated for January 2010, legal manoeuvring continues to plague Woodlands survivors who have been fighting for justice since 2002. But a February appellate court decision brought former residents an element of hope.

Woodlands was a government-run residential facility in New Westminster that was home to a staggering 9,125 unwanted children and disabled adults. Today there are an estimated 2,200 survivors of the institution, which operated between 1950 and 1996.

Class-action members sought an order for the release of an estimated 2.2 million pages of Woodlands-related documents, including records on involuntary sterilization. The court agreed, but the government appealed.

On February 13, 2009, justices unanimously ruled that the province must release the documents, but Victoria was slow in responding. In March, another ruling, this one by Supreme Court Justice Deborah Satanove, bolstered the February decision.

“In a case-management conference March 24 and 25, Judge Satanove ordered the province to answer all questions,” Woodlands survivor and class-action representative Bill McArthur told the Georgia Straight. “The province wanted just to respond to questions about sexual abuse, but the judge wants to look at all the practices at Woodlands, including the lack of educational and vocational resources. This is a great victory for us.”

McArthur added this as well: “She’s asked the province to provide individual residents’ files and the files [ex-ombudsman] Dulcie McCallum and the PGT [Public Guardian and Trustee of B.C.] accessed to write their reports on Woodlands, and staff files and occurrence reports…And she wasn’t very happy that the province had only provided 62 document files so far.”

McCallum’s 2001 review of conditions at Woodlands found widespread physical, sexual, and psychological abuse. Released in 2002, her report urged government to apologize and compensate victims. The B.C. Liberal government apologized but refused to pay compensation, and still denies that systemic abuse occurred. Survivors launched a class-action suit in 2002.

In the 2005 case Arishenkoff v. British Columbia, the court found the Crown and its agents couldn’t be held liable for any wrongdoing prior to the implementation of the Crown Proceedings Act of August 1, 1974.

In 2006, government offered a settlement, but the offer required each person to prove their abuse before an arbitrator, who would determine damages based on each assault. Some assaults (e.g., anal versus vaginal rape) were worth more than others.

Calling the offer “degrading and dehumanizing”, McArthur instructed class counsel Poyner-Baxter to reject the offer. Jim Poyner then asked the court to remove McArthur as plaintiff and to divide the class into pre- and post-1974 claimants. McArthur sought new counsel and asked the court to remove Poyner-Baxter, and in 2007 the court agreed. Poyner appealed—an appeal abandoned after Poyner-Baxter and new class counsel David Klein agreed to work together.

But in 2008, citing Arishenkoff, the province applied to exclude all members resident at Woodlands prior to August 1, 1974, and the court agreed, eliminating more than 1,000 potential claimants. Klein appealed—that decision is still pending.

Fort Hood tragedy rocks military as it grapples with mental health issues

November 11th, 2009


The U.S. military’s culture of silence about troops’ mental health had finally begun to change.

In the early years of the wars in Iraq and Afghanistan, the various branches had been roundly criticized for failing to adequately address post-traumatic stress disorder, or PTSD, and other psychiatric problems. Responding to that criticism, leaders made progress in diagnosing and treating such illnesses among service members.

But Thursday’s attack at Ft. Hood — as well as two other recent incidents in which military personnel allegedly turned guns on their own — indicates an intractable problem not easily overcome.

In last week’s incident, Army psychiatrist Maj. Nidal Malik Hasan allegedly fired repeatedly at colleagues on the Texas base, killing 13 and wounding more than 30, before being felled by civilian base police officers. Hasan, who was about to be deployed to Afghanistan, is now hospitalized.

The fact that the suspect is a psychiatrist “is a one-in-a-billion case,” said Floyd Meshad, who served as a psychiatric social worker in the Vietnam War and is president of the National Veterans Foundation in Los Angeles. “But it does red-flag a lot of questions.”

Those questions include whether, even today, military personnel can easily obtain mental health services.

The factors that may have led to Hasan’s alleged actions are not yet clear. What is clear is that no one is immune to mental health problems: Doctors have slightly higher suicide rates than does the general population.

“Psychiatrists can have emotional difficulties too. We are humans like everyone else,” said Dr. William Callahan, a psychiatrist in Aliso Viejo who served as a flight surgeon in the 1991 Persian Gulf War. “It’s a shocking reminder of how much we need to do to get people access and better treatment.”

Military leaders acknowledge rampant psychiatric problems in their midst. According to the Army, the suicide rate among soldiers in Iraq is five times that seen in the Persian Gulf War and 11% higher than during Vietnam. The Army reported 133 suicides in 2008, the most ever. In January of this year, the 24 suicides reported by the Army outnumbered U.S. combat-related deaths in Iraq and Afghanistan.

The Marine Corps also reported an increase in suicides in 2008, to 41. The Army and Marine Corps have provided most of the troops in the two wars.

In April 2008, researchers at the Rand Corp. published a study showing that almost 20% of personnel returning from Iraq and Afghanistan reported PTSD or depression. Just over half of those had sought treatment.

“I think the military fully understands the magnitude of this problem,” said Dahr Jamail, a journalist and author of a new book, “The Will to Resist: Soldiers Who Refuse to Fight in Iraq and Afghanistan.”

“This issue of redeploying people repeatedly is a massive crisis,” Jamail said. “It’s creating a point of collapse in the military.”

In fact, Jamail said, he is surprised that violent incidents aren’t more frequent.

The wars in Iraq and Afghanistan have generated an array of mental and behavioral problems, experts say. Besides PTSD, a high rate of traumatic brain injury has contributed to cognitive and psychiatric symptoms. The wars have been long and, without a national draft in place, many troops have been subject to repeat deployment. The nature of the conflicts — fighting insurgents who mingle among civilians — is considered an additional, constant source of stress.

Military violence has been a problem in recent years. An Army sergeant has been accused of killing two superiors at a base south of Baghdad last year. And in May, an Army sergeant allegedly opened fire in a stress clinic on a base in Baghdad, killing five fellow soldiers.

The symptoms of mental health problems can include anxiety, depression, hyper-vigilance, insomnia, nightmares, emotional numbness, cognitive difficulties and intrusive thoughts. Some troops report feelings of guilt or sorrow that they cannot overcome. Others begin to abuse alcohol or drugs. Loneliness, divorce and domestic violence are common.

Service personnel have traditionally been reluctant to seek counseling because doing so might go on their records, said Meshad, who teaches mental health workers about compassion fatigue — a gradual erosion of compassion for one’s patients and apathy about their plight.

“We have a system that has a Catch-22, and it’s time the military faced it,” he said. “These soldiers would like to see a therapist. But there must be a way where it can be confidential.”

Recently, military leaders have made strides in addressing the mental health crisis. In 2007, the Defense Department established the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury to promote prevention and treatment.

The department also recently launched a program called Real Warriors to fight the stigma surrounding mental health issues and promote treatment. In July, the Army provided $500 million for the largest study ever on suicide and mental health issues among military personnel and last month announced it would begin emotional-resilience training to prepare troops for the psychological duress of service.

“The military is doing more and more to address emotions,” Callahan said. “They are becoming more focused and precise in realizing they have got to prepare people emotionally for war.”

Some say military mental health providers, possibly including Hasan, carry heavy workloads as a result.

“They are horribly burned out,” said Aaron Glantz, author of the 2009 book “The War Comes Home: Washington’s Battle Against America’s Veterans.”

Military psychiatrists can face especially frustrating circumstances because they may recommend releasing a soldier from active duty or redeployment because of mental health problems, only to be overridden by a commanding officer, Glantz said.

In 2007, a soldier at Ft. Hood told mental health services that he was suicidal, but he was nonetheless ordered to redeploy.

“His commanding officer said, ‘I don’t care, I want you redeployed anyway,’ ” Glantz said. “He walked into a field and killed himself. Imagine if you’re the psychiatrist in that situation. All of these psychiatrists are experiencing this.”

shari.roan@latimes.com

Op Ed: Words can Cause Terrible Damage

November 9th, 2009

By Ian Birrell, The Independent

Racism was rife in the playgrounds of my youth. It seems incredible looking back, but if someone would not share their sweets or lend a few pennies to a friend in need of crisps, they might be mocked as “Jews”. Or even “Yids”. Sometimes, children would go so far as to rub their noses in a “Shylock” gesture to emphasise the point.

It must have been hellish for the handful of Jewish pupils. Thankfully, as we grew older and began to learn the brutal history of anti-Semitism, the taunts dried up. Today, such behaviour is stamped upon. A lexicon of loathsome words has been driven underground as we make faltering steps forward towards a more tolerant society.

Sticks and stones break bones, but words wound. This explains why there are such howls of outrage when a low-rent celebrity makes a joke about “Pakis”, or when a newspaper columnist delivers a diatribe against homosexuals. Casual racism, crude stereotyping and abuse towards a minority is not just offensive, but corrosive.

So why is it acceptable against people with disabilities? When did they become such a forgotten minority that they ceased to matter in the battle against bigotry? A group so exiled still from mainstream society that it has become acceptable to fling around hateful words such as “retard” and “spazz” without a murmur of disquiet. Not just in the playground, where these words and many more like them are commonplace, but online, in the office, in the home and in Hollywood.

This week, we had two of the hottest young actors, Robert Pattinson and Kristen Stewart, describe rumours of their romance as “so retarded”. Last month, Guy Ritchie used the same word to describe his former wife. Previously, it was Lindsay Lohan, Courtney Love, Russell Brand and Britney Spears. Imagine how their careers would have nose-dived if they used language offensive to gay or black people.

Go on to YouTube and look at all the videos of people dancing “like a retard”. Or go on to MySpace and find an oh-so-funny gallery entitled “Adopt Your Own Retard”. Or go on to any one of dozens of internet sites and laugh at the jokes about “retards”. Or go on to the most popular political blogs and see the word bandied around as a term of abuse; one left-leaning site failed to spot the irony of a rant about “homophobic, racist retards” in a recent posting on the BNP.

It is not just the new media polluted by such unthinking contempt. Listen to radio phone-in shows. Or watch the film Tropic Thunder, which uses “retard” or “retarded”17 times and makes gags about actors going the “full retard”. Or check out the Black Eyed Peas song “Let’s Get Retarded” with its chorus “Everybody, Everybody, Let’s get into it, Get stupid, Get retarded”. This from a band whose main creative force was one of the most influential figures behind the mobilisation of support for the election of Barack Obama as President of the United States.

But then, even the first black president makes derogatory jokes about the disabled, while a leading French politician yesterday used autism as a form of political abuse against the Tories, and a supposedly-liberal newspaper splashed it across its front page without comment.

In America, the fightback has begun. The Special Olympics has launched a campaign to drive the word “retard” into disuse, asking people to pledge never to use the word. Many of the pledges are from children such as Samantha, who has a sister with special needs. “All my life I have heard people saying the r-word. It makes me really upset. No one understands how hurtful it is until you have someone close to you being called that.”

As the parent of a child with profound mental and physical disabilities, I share Samantha’s view. It is deeply upsetting to hear words once used to describe my daughter thrown around as a casual insult. But far worse than my own bruised sensitivities, language reflects how we view the world, reinforcing the exclusion of people with disabilities from the rest of society.

When people with physical disabilities are figures of fun and mental incapacity is a term of insult, is it any wonder my daughter gets unpleasant stares wherever she goes? Is it any wonder parents complain over the appearance of a children’s television presenter missing part of one arm? Or a major fashion chain insists that a similarly-disabled worker is hidden out of sight of customers? Or that a college allows classmates to hold a vote to ban a student with Down’s syndrome from a barbecue party, as happened this summer?

People should bear in mind that barely one in six disabled people are born with their disability, and the number of people with disabilities is rising. Despite this, there is so little interaction with disabled people that a recent survey by Scope discovered a majority of Britons believe most people see them as inferior people. Given this scarcely-believable finding, it is unsurprising that people with disabilities find it so much harder to get jobs, are far more likely to live in poverty, will be paid less and bullied more if they do find work and, increasingly, are victims of hate crime.

Six weeks ago, Britain was engulfed in outrage over the terrible story of Fiona Pilkington, who killed herself and her disabled daughter after years of hostility from her neighbours. But the reality is that disabled people are regularly mocked, taunted, harassed, hurt and humiliated, with the most vulnerable – those with mental disability – suffering the worst. There are even cases of torture and disembowelment, of a woman urinated on and filmed as she lay dying in a doorway.

Hate crime is the most extreme articulation of the prejudice that disabled people endure on a daily basis. Its roots lie in contempt, fertilised by misguided feelings of superiority. So will anything really change while retard is an acceptable term of abuse, and autism is used to denigrate political rivals?

“We are giving people permission to say and do hateful things,” said John Knight, director of policy and campaigns at Leonard Cheshire Disability, who himself had to endure screams of “spastic” from two aggressive men in the street just a fortnight ago. “And it’s getting worse. If we don’t address low-level abuse, we let people think it’s acceptable, allowing it to proliferate and become mainstream.”

An investigation into crime against the disabled revealed that nearly two-thirds of people with mental health problems had been abused in the street in the previous two years, with about a quarter suffering sexual harassment or physical assault. But only 141 disabled hate crimes were successfully prosecuted in a year, compared with 778 homophobic cases and 6,689 racial cases. The Home Office does not even bother collecting statistics on disability hate crime, unlike racially or religious-based offences.

We are retreating in the fight to offer respect and inclusion to more than one million of our fellow citizens. John Bangs, head of education at the National Union of Teachers, admitted to me that the promotion of disabled rights had fallen back in the past decade while schools concentrated on racism and homophobia. And as the struggle for inclusion in society gets harder, the stares get more pronounced, the insults more widely heard, the harassment worse – and more and more people with disabilities will abandon their personal battles and withdraw to their ghettos.

Is this really what we want? Or should we at the very least start to mind our language?

Woman Shatters Stereotypes, Shares Experience with Down Syndrome

November 6th, 2009

By Leah Boyd, Daily Press & Argus

Nineteen years ago, doctors told parents Mike and LuAnn Loy they should consider institutionalizing their newborn daughter diagnosed with Down syndrome.

Today, the proud parents feel so grateful because they didn’t listen.

“We just felt that Abby deserved the chance to explore her potential just like our other children,” LuAnn Loy said. “I just didn’t want to put limitations on her. We were prepared to accept less, but not expect less.”

Not only can 19-year-old Abby Loy read, but she has toured the region in recent weeks to give oral presentations about Down syndrome to government and education groups. In her presentation, Abby Loy tells how the cognitive disorder has affected her life — such as causing delayed speech and coordination development — but also has not stopped her from living a happy life.

The presentation is meant to bring awareness and break stereotypes about people with Down syndrome.

“Most people don’t understand Down syndrome very well,” Abby Loy said. “Each person with Down syndrome has strengths and weaknesses.”

Abby Loy happens to have many strengths.

The recent Brighton High Schoolgraduate — who described herself as outgoing and caring — now attends Washtenaw Community College. She is studying child development and dance, which is a favorite hobby along with baby-sitting and horseback riding.

During high school, Abby Loy played clarinet in the marching band, and competed in swimming and teen beauty pageants. She has a boyfriend, Max, who accompanied her to the prom.

In 2005, Abby Loy ended up on C-SPAN during a trip to Washington, D.C., to lobby for what became the Prenatally and Post-natally Diagnosed Conditions Awareness Act signed into law last year. She met Sens. Carl Levin, D-Detroit, Debbie Stabenow, D-Lansing, and the late Ted Kennedy, D-Mass., during the trip.

Abby Loy presented all of her accomplishments during an Oct. 23 presentation to a University of Michigan class of second-year medical students. Professor Jenny Christner said the class “fell in love with Abby.” Christner said about 75 percent of her students said Abby Loy’s presentation was their favorite aspect of the class.

“She’s just adorable and really able to connect to people really well,” Christner said. “I thought it was a very powerful presentation to hear everything she has done.”

“To hear her talk about what she’s doing now in terms of her career and ongoing education was really encouraging,” Routt said.

What Abby Loy has been able to accomplish despite having a disability has not been easy. LuAnn Loy said she and her husband had to push for their daughter’s rights and and believe in her potential when no one else would.

LuAnn Loy said she refused to allow her daughter to be segregated from general-education classes and took on much of the responsibility in teaching her daughter to read.

“Individuals in the school system didn’t always agree with our vision of what Abby would be able to achieve,” LuAnn Loy said. “We had a vision of success for Abby. We weren’t sure what success would include but we encouraged her to dream.”

Abby Loy seems to be happy with the outcome.

“I feel great,” Abby Loy said. “I love my life and my journey.”

How Tech for the Disabled Is Going Mainstream

November 4th, 2009

By Reena Jana, Business Week

Apple is widely celebrated for making devices as easy to use as they are elegantly designed. What customers probably don’t know is that some of these features aren’t exactly new—they evolved from software Apple created to help disabled people use PCs. Among them: the new iPhone’s voice control option, which allows users to speak to their handsets to prompt an action, such as calling Mom, or to get a spoken answer to such questions as “What song is playing?”

And “mainstreaming” tools for the disabled is spreading. Software developer Nuance Communications, for instance, invented voice command technology to help people who are unable to type on a computer. Today, the company’s algorithms are used in products ranging from Amazon.com’s latest Kindle e-reader to cars from Ford Motor. Meantime, Mattel is incorporating technology, initially intended to help paraplegics, into a soon-to-be-released game controlled by players’ brainwaves.

Other companies should consider following these trailblazers, say innovation consultants. “Companies could look at designing for accessibility as a sales opportunity. Most features that are accessible for the disabled have great value to everybody,” says Donald A. Norman, a former Apple vice-president for advanced technology who heads a joint business and engineering program at Northwestern University.

Benefits for the Blind

Mainstreaming has a long history. Thomas Edison saw his invention of the phonograph as a way to open the printed world to the blind by recording book readings. More recently, predictive-text software, the algorithms that finish words people type in search engines or e-mail, had its roots in technology geared to the disabled, according to patents filed for related programs.

Apple’s VoiceOver feature can be traced back to the late 1980s, says Norman, when the computer maker decided to try to embed “universal access” in its Macintosh PC line. The term is used in engineering and design circles to describe goods, from scissors to cell phones, made in such a way that people of any age or physical ability can use them. VoiceOver became a standard feature of Apple computers in 2006. When it’s activated, the Mac reads everything highlighted by the cursor, from text on a Web page to numbers in a database, in a natural-sounding voice.

While VoiceOver helped broaden Apple’s reach to the blind, it also became a mini-engine for innovation within the company. “When we created the VoiceOver idea and concept for the Mac, we also realized we could take advantage of it by mainstreaming it,” says Greg Joswiak, Apple’s vice-president for iPod and iPhone marketing.

Now the technology has made its way into the iPod Shuffle. Unlike its larger brethren, the Shuffle is too small to have a screen to display information about its music content. The latest model, introduced last March, gets around this shortcoming with software that can say what song is playing. Sales were 51% higher in the new Shuffle’s first week than they were for the previous model’s debut, says Barclays Capital analyst Benjamin Reitzes. The low $79 price undoubtedly was part of the reason. But many users raved online about the voice interface, indicating that the feature helped popularize the music player, too.

Apple added a reverse version of Voice Over to its third-generation iPhone, released in June, that enables users to tell the phone to perform functions rather than type commands

That permits hands-free use of the smartphone and makes the device functional for people with visual and other physical handicaps, as well as for motorists. “Some customers need assistive technologies, and other people want convenience,” says Joswiak. “We try to solve problems for the disabled community, then we drive the solutions into the mainstream, to let everyone take advantage of them.”

The rising demand for devices that can speak and be spoken to has been a boon for Nuance Communications. The Burlington (Mass.) company supplies voice control software for a growing number of products, from its Dragon NaturallySpeaking speech recognition software for PCs to hands-free voice dialing for phones from Nokia, Samsung, LG Electronics, and BlackBerry maker Research in Motion. Through a joint Ford-Microsoft venture called Sync, Nuance also provides voice command capabilities in top-selling GPS navigation devices, such as Garmin and TomTom, as well as in Ford, Lincoln, and Mercury vehicles.

“While the disabled aren’t a significant percentage of our users today, they are our biggest power users,” says Peter Mahoney, general manager of Nuance’s Dragon unit. “They help us push the envelope” when it comes to improving products for mass-market customers.

Other companies are borrowing technology that aids the deaf. At Google, a deaf software engineer, Ken Harrenstein, spearheaded the creation of a captioning tool for videos posted on Google’s YouTube site. His original intention was to help deaf users. But the company soon figured out the software could also help translate languages. That idea led in late 2008 to an auto-translation tool that allows people to add captions in 50 languages instantly to YouTube videos they upload, increasing the number of people who can watch and understand the clips.

Mind Control

Mattel is taking mainstreaming into the toy market. In October it plans to release Mindflex, an $80 game that borrows from technology used by severely disabled people to control electronic devices by channeling brainwaves via sensors. Mattel has licensed the toy’s brainwave-harvesting technology from a San Jose company called NeuroSky. To play, users put on a headband with sensors. By focusing their thoughts on motion, they can cause a motor to propel small plastic balls through a tabletop obstacle course. When they relax, the objects stop moving.

Mattel is betting that the technology will become the basis for a line of mind-controlled physical games like Mindflex, opening up a new category for the toy industry, says Geoff Walker, a senior marketing vice-president at the El Segundo (Calif.) company.

As pioneers boost sales by incorporating technology once confined to products for the handicapped, other companies are sure to follow. They could come out ahead, says Tim Bajarin, president of technology consultancy Creative Strategies in Campbell, Calif. “It’s smart, because there is an aging population that will need easier-to-use tech. It’s even smarter to follow Apple’s lead—and then call these features out and get people’s attention. Then it becomes a competitive advantage.”