Ten Specific Problems with the U.N Convention on the Rights of Persons with Disabilities

By Michael Farris

The UN Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly on December 13, 2006, and entered into force on May 3, 2008, after it received its 20th ratification. The Optional Protocol to the Convention went into force on the same day after it received its 10th ratification. The CRPD was signed by President Obama on July 30, 2009. Since it has been sent to the U.S. Senate for ratification by President Obama, the U.S. Senate could vote to ratify this treaty at any time.

CRPD calls for numerous protections for people with disabilities. Many of these protections are included in U.S. law as part of the Americans with Disabilities Act (ADA). However, CRPD also includes numerous provisions drafted by the United Nations which would concern many U.S. citizens. Like the Convention on the Rights of the Child (CRC) and Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), if ratified, the Convention on the Rights of Persons with Disabilities would become the supreme law of the land under the U.S. Constitution’s Supremacy Clause in Article VI, would trump state laws, and would be used as binding precedent by state and federal judges. Since it is a treaty, the U.S. Constitution requires that it must be ratified by two-thirds of the U.S. senators present at the time of the vote, or 67 senators if all 100 U.S. senators were present.

Here are 10 specific problems I see with the CRPD as written.

1. Any remaining state sovereignty on the issue of disability law will be entirely eliminated by the ratification of this treaty. The rule of international law is that the nation-state that ratifies the treaty has the obligation to ensure compliance. This gives Congress total authority to legislate on all matters regarding disability law—a power that is substantially limited today. Article 4(5) makes this explicit.

2. Article 4(1)(a) demands that all American law on this subject be conformed to the standards of the UN.

3. Article 4(1)(e) remands that “every person, organization, or private enterprise” must eliminate discrimination on the basis of disability. On its face, this means that every home owner would have to make their own home fully accessible to those with disabilities. If the UN wants to make exceptions, perhaps they could. But, on its face this is the meaning of the treaty.

4. Article 4(1)(e) also means that the legal standard for the number of handicapped spaces required for parking at your church will be established by the UN—not your local government or your church.

5. Article 4(2) requires the United States to use its maximum resources for compliance with these standards. The UN has interpreted similar provisions in the UN Convention on the Rights of the Child to criticize nations who spend too much on military issues and not enough on social programs. There is every reason to believe that the UN would interpret these provisions in a similar fashion. The UN believes that it has the power to determine the legitimacy and lawfulness of the budget of the United States to assess compliance with such treaties.

6. Article 6(2) is a backdoor method of requiring the United States to comply with the general provisions of the UN Convention on the Elimination of All Forms of Discrimination against Women. This treaty enshrines abortion rights, homosexual rights, and demands the complete disarmament of all people.

7. Article 7(2) advances the identical standard for the control of children with disabilities as is contained in the UN Convention on the Rights of the Child. This means that the government—acting under UN directives—gets to determine for all children with disabilities what the government thinks is best.

Additionally, under current American law, federal law requires public schools to offer special assistance to children with disabilities. However, no parent is required to accept such assistance. Under this section the government—and not the parent—would have the ultimate authority to determine if a child with special needs will be homeschooled, attend a private school, or be required to accept the program offered by the public school.

8. The United States, as a wealthy nation, would be obligated to fund disability programs in nations that could not afford their own programs under the dictates of Article 4(2). This is what “the framework of international cooperation” means.

9. Article 15’s call for a ban on “inhuman or degrading treatment or punishment” is the exact same language used in the UN CRC which has been authoritatively interpreted to ban any spanking by parents. It should be noted that Article 15 is not limited to persons with disabilities. It says “no one shall be subjected to … inhuman or degrading treatment.” This means that spanking will be banned entirely in the United States.

10. Article 25 on Education does not repeat the parental rights rules of earlier human rights treaties such as the International Covenant on Civil and Political Rights or the International Covenant on Economic, Social, and Cultural Rights. This is an important omission. Coupling this omission with the direct declaration of “the best interest of the child” standard in Article 7(2), this convention is nothing less than the complete eradication of parental rights for the education of children with disabilities.

Michael Farris is the Founder and Chairman of the Home School Legal Defense Association

Editor’s Note – The U.S. Senate Committee on Foreign Relations is scheduled to hold a hearing on the CRPD on July 12, 2012.

Caffeinated Thoughts

Dwarves in Philippines plan to build colony where they can live in peace

Alejandro Doron, one of Manila’s many dwarves, hopes to escape daily harassment and ridicule by starting a dwarf-only community on a plot of land in Manila

Alejandro Doron Jr, left, hopes that the Philippines government will help with his plans to create a colony that would also become a tourist attraction. Photograph: Kate Hodal

With his jet-black hair, golden skin and hazel eyes, Alejandro Doron Jr is the sort of man who regularly stops people in their tracks. He may be good-looking, but he knows why people stare. He’s small – 117cm (3ft 10in) small, in fact.

As one of Manila’s many unanos or dwarves, Doron hopes to end the harassment he faces daily by starting the Philippines‘ very first little people colony.

The 35-year-old bartender works at Manila’s only "dwarf bar", the Hobbit House, where he and his colleagues, ranging in height from 76cm to 135cm, serve tourists Hefeweizen beer and New York ribeye steaks, as dwarf comedians and Elvis impersonators perform on stage.

Just a 10-minute drive away, in the red light district of Makati, other dwarves don gold-and-black Speedos to perform in oil wrestling matches. Still others undress for fascinated sex tourists.

While there are no official figures for the Philippines, dwarfism – of which there are more than 200 distinct varieties – is generally defined as being 147cm or shorter.

The most common condition, achondroplasia, is thought to affect around one in 25,000 people.

Manila’s community of little people are highly visible because many of them have come to the capital to find both work and each other, says Doron.

"Otherwise, they are like me: the only dwarf in their village," vulnerable to both physical and verbal abuse.

Critics have questioned whether dwarf-specific jobs such as Doron’s are exploitative, but for many little people in the Philippines, such work can be a godsend.

While Filipinos are, on average, of short stature (163cm for men and 152cm for women), a minimum height requirement of 157cm exists for many jobs.

"I’m a computer programmer by profession, but even if you have a good resumé and meet the job qualifications, [potential employers] say there’s a height restriction, so they can’t hire you," says Jonathan Cancela, 30, who, at 142cm, has worked for the past few years as an oil wrestler at the Ringside bar.

The Philippines has had a longstanding fascination with little people, popularised in the 1970s by TV shows and films on dwarf boxing, wrestling, comedy and kung fu.

Even today, if a little person is the only dwarf in the immediate family, which occurs in about 80% of cases worldwide, popular Filipino legend dictates that the mother must have been watching "dwarf TV" while she was pregnant.

Such an interest in little people means that many of them, at least in Manila, have plenty of work. Doron often dons fancy dress to play leprechauns and monsters for TV shows, children’s parties and even so-called Snow White weddings. He also recently starred as a cross-dressing, papal-robed shaman in the film Son of God.

At the three-storey squat he shares with 11 others – including his own family and that of his sister’s – Doron slowly sips a glass of cola while his partner Olivia Fernandez, 38, who is 157cm, rocks their one-year-old baby in her arms. Of their five children, two are dwarves. Fifteen-year-old Rina has taken the day off from school for fear of bullying.

"Some boys wanted to cause a rumble, so I am home," she says quietly, standing at 86cm.

"It is hard for me – people say I’m small, they shout at me. But I just go to school to learn more about life."

Fernandez says she has faced opposition from both friends and family over her relationship with Doron; and seven-year-old daughter Glysdi, also a dwarf, gets so much verbal abuse that "she is always crying".

"I told them, if people talk about you, don’t listen to what they say," says Doron, who left secondary school early due to harassment.

"But it’s hard. It’s the natural attitude of the people … I prayed that all my kids would be normal, but I have no choice – this is what God gave me."

Being free from this constant abuse, says Doron, is the reason why he and about 30 other dwarves are planning to establish a colony.

An investor has donated 16,000 sq m of land near Manila, though the fields still have to be cleared, the houses built, and the businesses started.

But money is tight, and Doron hopes that local politicians will help with funding and that the colony will one day become a tourist hotspot.

So-called dwarf towns have existed in the past – in Coney Island at the turn of the century and more recently in Kunming, China – but not everyone agrees that they help in the long run.

"The answer is not segregation," says Gary Arnold of the charity Little People of America.

"The answer is raising awareness about differences and doing all we can to promote communities that embrace and are inclusive of all differences."

Dressed in children’s jeans and a T-shirt, Doron slowly winds his way back to work through alleys crowded with caged roosters and stray dogs.

A neighbour, wiping away the afternoon’s heat with a handkerchief, cackles loudly as he passes. "Ooooh!" she laughs. "There goes the dwarf!"

Doron turns and smiles at her, then continues deliberately on his way.

The Guardian

4 Ways iPads Are Changing the Lives of People With Disabilities

Noah Rahman has moderate Cerebral Palsy affecting his communication, cognition and upper and lower body movement. When he turned two, his language, cognitive ability and fine motor skills were diagnosed by a developmental specialist as being at least 12 months behind. Then Noah got an iPad.

Four months later, his language and cognition were on par with his age level. His fine motor skills had made significant leaps.

Today, the three-year-old (pictured at right with his father) spends an hour or two on his iPad each day. He switches his apps between reading and writing in English, Arabic and Spanish. In the fall, he’ll enter a classroom of five-year-olds. “The iPad unlocked his motivation and his desire because it’s fun,” says his dad Sami Rahman, co-founder of SNApps4Kids, a community of parents, therapists and educators sharing their experiences using the iPad, iPod touch, iPhone and Android to help children with special needs.

SNApps4Kids taps into a burgeoning trend for people with disabilities. Touch devices — most notably the iPad — are revolutionizing the lives of children, adults and seniors with special needs. Rahman estimates some 40,000 apps have been developed for this demographic.

“Touch has made it exceptionally accessible — everyone has an iPad, everyone has an iPod,” says Michelle Diament, cofounder of Disability Scoop, a source for news relating to developmental disabilities. “If you’re someone with a disability, having something that other people are using makes you feel like part of the in-crowd.”

For people lacking motor skills, touch screens are more intuitive devices. There is no mouse, keyboard or pen intercepting their communication with the screen. Larger platforms, like iPads, are preferred over smaller iOSand Android devices for ease-of-use and, of course, the cool factor.

Here are four ways that touch devices are changing the lives of people with disabilities:

As a Communicator

Before the iPad and other similar devices, using touch-to-speak technology was incredibly expensive, costing around $8,000. Now, it only costs $499 for an iPad and $189.99 for a thorough touch-to-speak app likeProloquo2Go.  That relative affordability has made the technology more available for children and adults that can’t use their voice. With the simple touch of an iPad, a hungry non-verbal person can communicate exactly what he or she would like to eat. Those apps can then be customized with photos or features to suit an individual’s life and needs. Another option is Assistive Chat, which predicts several sentence completion options. For the most severely disabled people, Yes|No is a simple app that allows individuals to voice their preference in yes-or-no responses.

“It gives dignity back to people who are more disabled,” says Vicki Windham, a special education teacher in the Clarkstown Central School District who trains people of all ages to make the most of their iPads. Windhamreviews apps for people with a variety of special needs.

For hard-of-hearing iPad users, soundAmp R amplifies sound in a variety of situations. Users can also record lectures or presentations they want to listen to again later.

As a Therapeutic Device

SNApps4Kids co-founder Cristen Reat’s son Vincent was born with Down syndrome, which can also lead to low-muscle mass. While he can walk, Reat describes his son as a Buddha that prefers to sit still most of the time. Throughout his life, Vincent’s therapists and parents have tried to help him be more active. It was not until his physical therapist placed an iPad on a treadmill that Vincent was motivated to walk. He now stays on for nine and a half minutes, interacting with his iPad while he’s in motion.

In addition to increasing his gross motor ability to walk, Vincent’s iPad has helped his fine motor skills. For Vincent, computers and older technology required visual shifting — between a mouse or keyboard and the screen. On an iPad, Vincent can watch as one of his fingers writes directly on the screen to make selections.

Similarly, Noah Rahman has shown motor improvement. After playing the Elmo Loves ABCs app on his iPad, he can write the entire alphabet, requiring sophisticated finger isolation. As a three-year-old, this puts him well above his grade level. “First it was ‘do it for me,’ then it was ‘do it with me,’ now he does it by himself,” says Noah’s father.

As an Educational Tool

Years ago, one of Jeremy Brown’s autistic elementary school students picked up his iPhone off his desk and began navigating the iOS with ease. “It’s like a fish to water,” says Brown, a teacher for autistic elementary school students, of his students’ interactions with touch technology.

Brown is immersed in online discussions of technology and special education, moderating the Facebook groupiTeach Special Education, collaborating on the podcast EdCeptional and coauthoring the blog Teaching All Students. While use of the iPad in classrooms is not yet approved in his school district, he believes the iPad is a great supplemental method of instruction, estimating 80% to 90% of his students with autism see great results when using iOS devices. Brown hopes his school district and others across the country will approve iPads in the classroom.

While no one advocates replacing traditional instruction, a number of apps do address academic subjects from math to language to reading and writing. In October 2010, Apple even featured an “Apps for Special Education” section in the App Store.

Brown encourages parents to separate their children’s recreational uses of the iPad from those in the classroom. Some students may watch YouTube videos on the school bus but while they’re at school they know Mr. Brown’s iPads are only for education.

As a Behavior Monitor

Behavior Tracker Pro is a popular app for parents, therapists and teachers to quantify the behavioural progress of children with special needs. In addition to taking notes, good and bad behaviours can be video recorded and later reviewed. The app automatically turns that input into visual graphs and charts.

High school teacher Vicki Windman notes that the iPad can also be a great way to strengthen and reinforce memory for seniors with Alzheimer’s or memory loss. Still, she warns that touch technology is not a miracle drug: “You’re not curing Alzheimer’s. Parents challenge me all the time — they want a cure. It’s no cure.”

That doesn’t mean it can’t help. Apps like Medication Reminder tell users when it’s time to take medication.Memory Practice, a memory strengthening app, was created for the developer’s mother shortly after she was diagnosed with Alzheimer’s. Windman’s father uses an app called Nudge, which gives him a persistent reminder every fifteen minutes to accomplish lapsed tasks on his to-do list.

Long-Roads Ahead

Despite these successes, SNApps4Kids cofounder Cristen Reat recommends a measured approach. “Just because you buy a device doesn’t mean it’s going to change anything,” she says.

Rahman agrees. He says that viewing the iPad as the solution is the backwards approach. “We are big advocates that the user needs to understand the objectives first before you pick the technology,” Rahman says. “We’re not just putting [our son] in front of an iPad and walking away. That’s the real key.”

ENABLE AND EMPOWER

The draft Rights of Persons with Disabilities Bill breaks new ground in protecting the civil and political rights of the disabled, says Hemchhaya De

Syed Sallauddin Pasha feels that India needs an Anna Hazare to fight for disability rights. The art therapist-cum-classical dance trainer would know what an uphill task it is for persons with disabilities to make their mark. He has trained about 150 dancers with disabilities in his Delhi-based organisation, Ability Unlimited Foundation, known for its exquisite “Bharatanatyam on wheels” performed by dancers on wheelchairs.

“I have written several times to leading government organisations like Sangeet Natak Akademy to help differently-abled artistes in India participate in premier art festivals across the country,” says Pasha. “But unfortunately, unlike government-backed initiatives in the West, artistes with disabilities in this country are given short shrift.”

Pasha hopes the government will pass stronger laws to end such social inequalities. And he feels the recently drafted Rights of Persons with Disabilities (RPD) Bill, 2010, might just be the answer to his prayers.

In April last year, the ministry of social justice and empowerment appointed a committee to prepare a draft RPD Bill that seeks to replace the existing Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act of 1995. After a year of exhaustive state and national-level discussions with various stakeholders, the committee — comprising disability rights activists, government representatives, legal scholars and medical professionals — has submitted the final draft of the bill to the ministry.

“We have received the final draft from the committee we appointed. We’ll now follow the usual legislative process, such as inviting suggestions from state governments and sending them to a parliamentary standing committee, before it’s tabled in Parliament,” says a senior official at the ministry who does not wish to be named.

“This is a standard practice with all bills,” says Sudha Kaul, head of the Indian Institute of Cerebral Palsy, Calcutta, under whose chairpersonship the committee drafted the bill. “The proposed law seeks to put in place a charter of rights in accordance with the mandate of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) to which India is a signatory.”

The UNCRPD — which was adopted on December 13, 2006, at the United Nations Headquarters in New York — speaks of a “paradigm shift” in attitudes towards persons with disabilities. It says that the disabled should be seen not as objects of charity but as “subjects” who are free to exercise their rights like any other individual in society. The legislation proposed is inspired by these UNCRPD principles.

In addition to the 1995 Act, India has other disability-specific laws like the National Trust Act, which is concerned with the welfare of people with autism, cerebral palsy and multiple disabilities, and the Rehabilitation Council of India Act that regulates the training of rehabilitation professionals in the disability sector. Nevertheless, experts say these laws are narrow in scope. They stress that the need of the hour is a more comprehensive, rights-based law for persons with disabilities who constitute about two per cent of the Indian population.

Says Amita Dhanda, professor and head, Centre for Disability Studies, Nalsar University of Law, Hyderabad, who was part of the team which drafted the RPD Bill, “Yes, we have laws, but they are welfare-oriented. We do not have a rights-based law in the country and consequently the present legislation is required.” She adds that the existing disability law makes room for some of the socio-economic rights recognised by the UNCRPD such as education and employment. “But the law is totally silent on the issue of equality and non-discrimination. It does not look at the practical implementation of civil-political rights,” she says.

The draft RPD Bill, on the other hand, seems to be breaking substantial new grounds. Take the provision for service animals — the first time that such a provision has been included in a law for disabled people. Section 82 of the draft bill says, “The appropriate governments and establishments shall permit and facilitate the use of service animals by persons with disabilities on roads, buildings, all transport systems, public facility or service.” Furthermore, a person with disability will have the right “to be accompanied by a service animal without being required to pay an extra charge”.

The proposed law is also geared to the protection of the rights of women and children with disabilities. Experts say that women with disabilities are often forced to opt for sterilisation. Section 30 of the draft bill addresses this problem. It states, “Persons with disabilities, particularly women and children with disabilities, shall have the right to retain their fertility” and “no person with disability shall be subject to any medical procedure which leads to or could lead to infertility without their free and informed consent”.

Any violation of this will attract imprisonment and a fine. As Section 153 specifies, “whoever performs, conducts or directs any medical procedure to be performed on a woman with disability which leads to or is likely to lead to termination of pregnancy without her express consent” could face 10 years in jail along with a fine. And any caregiver, a parent or a guardian, who fails to prevent such wrongful medical procedure is also liable to be imprisoned and fined. Moreover, there is a provision for disabled persons to opt for postal ballot if they cannot vote in person, and for electoral booths to be made completely accessible to them. The bill also proposes 7 per cent reservation in higher education for the disabled, raising it from the current one per cent.

Most social activists who work with disabled persons are happy with the draft bill. Says Bhargavi Davar, director, Centre for Advocacy in Mental Health, Pune, “It is a very comprehensive legislation, and has covered vast new areas. We hope the sheer scope of the new legislation will lead to the immediate formation of a ministry for disability affairs, which the sector has been asking for, for a long time.”

However, one particular provision in the draft bill has come in for considerable criticism. This relates to “limited guardianship” or a joint decision-making process between a person with disability and his or her guardian. “The limitations on legal capacity compromises all the rights or freedoms promised in the draft,” insists Davar.

The drafting panel contends that the proposed bill, like the UNCRPD, recognises that all persons with disabilities can exercise legal capacity on an equal basis with others in all areas of life. “However, there is a duty on the part of appropriate governments to provide support. The choice to accept or refuse that support is with persons with disabilities,” says Dhanda. She adds that a number of persons with disabilities are in plenary guardianship today. A plenary guardian is one who takes decisions in the best interest of the person with disabilities but without consulting him or her. “The bill has replaced this system with limited guardianship,” says Dhanda. “Insofar as limited guardianship is required to operate on mutual understanding and trust, it is in consonance with the rights-based orientation of the law.”

On the whole, there is little doubt that the RPD Bill will usher a new era in disability rights in the country. For the differently abled, it may be the beginning of a better life.

The Telegraph

Disabling Disability

Exhibition highlights technology to aid people with impaired hearing and eyesight

Technology has come to the aid of people with disabilities, thanks to the ingenuity of university students whose gadgets, soon to go on view at i-CREATe 2011, could help bridge gaps in their communication with other people and enable them to do their daily chores on their own.  i-CREATe stands for International Convention for Rehabilitation Engineering & Assistive Technology, and it is being organised by the National Electronics and Computer Technology Centre (Nectec) with cooperation from the Singapore-based Therapeutic, Assistive & Rehabilitative Technology Centre.

The exhibition will feature cutting-edge technology and innovations that are the result of research projects focussing on people with disabilities, such as impaired hearing and eyesight, undertaken by students in Thailand and overseas. There will also be workshops and seminars.  One highlight is the Student Design Challenge forum that will showcase, among others, communication software, a sign-language translator, a brain-controlled wheelchair, and a universal standing wheelchair for children with cerebral palsy.  The communication software is called CPEeK-Up (pronounced "speak up") and was developed by Kasetsart University’s Faculty of Engineering. It combines automatic speech synthesis, Bluetooth technology and self-designed hardware to simulate communication assistance that serves as an intermediary between interlocutors. This software connects to a phone via Bluetooth and the designed hardware, and conveys speech signals to a PC. Handicapped people can engage in conversation using then text-based interface. The system then synthesises speech and sends it to the person the user is conversing with.

This hybrid EEG-HEG based neuro feedback device can help with disorders associated with hyperactivity.  Phiradet Bangcharoensap, part the team that developed the software, said it is an automatic telecommunications relay service program that helps people with speech disorders to be able to talk to others via the phone.  The program can synthesise both Thai and English, in male or female voices, and features spell-checking and auto vocabulary guessing. It also has a transliteration service supporting speech synthesis of mixed up Thai-English text. 

Phiradet said the existing telecommunications relay service (TRS) allows people with speech disorder to access telecommunication technologies, and they typically use operators, known as communication assistance (CA), to relay conversations between a handicapped person and an interlocutor. It thus may be discomforting in terms of privacy.

Phiradet explained that the program will improve the access of people with disabilities to today’s communication technologies and facilitate their ability to earn.  "Because this entire software is based on an automatic system, it can lower the cost of deploying TRS in Thailand and reduce privacy concerns," he said.   

This program, with text-to-speech technology, helps handicapped people communicate by connecting their phones via Bluetooth technology.  Mahidol University’s Brain Computer Interface Laboratory (BCIL) will showcase two gadgets. The first is Hybrid EEG-HEG, a neuro feedback device that helps in the treatment of hyperactivity disorder.  Supassorn Rodrak, one of the team that developed the device, explained that Attention Deficit/Hyperactivity Disorder (ADHD) is a brain disorder that affects 6.5% of children in Thailand. The current method for treatment is by drugs, but that generally leads to side effects such as vomiting, dizziness and headaches. Neuro feedback is an alternative treatment that can beat these side effects. 

She said the signals often employed in neuro feedback are electroencephalogram (EEG) and hemoencephagram (HEG).  EEG is brain wave that changes its frequency in conjunction with brain activities. HEG is the measurement of blood flow in the brain that changes with oxygenation of blood. Both signals have their advantages and drawbacks.  To eliminate the disadvantages of both signals, her team has proposed the Hybrid EEG-HEG neuro feedback device that employs both signals to achieve the highest accuracy. The hybrid system can efficiently eliminate artifact problems occurring when using only the EEG. Moreover, the system can improve the low changing rate when using only HEG. 

A brain-controlled wheelchair.  Besides ADHD, the device can also serve those suffering from autism or Alzheimer’s disease, and general people who want to exercise their brain. The neuro feedback is a standalone system that can be deployed both at hospital or at home.  The other project from Mahidol University is the brain-controlled wheelchair developed by its PhD students. It makes use of a hybrid EEG and electrooculogram (EOG) brain-computer interface system for practical machine control.  Yunyong Punsawad, one of the team that developed it, pointed out that the problems with existing brain-computer interface (BCI) systems are to do with practical issues such as accuracy of various subjects, the number of sensors, and the time involved for training.

The team has proposed a hybrid framework for the brain-computer interface to be controlled by machine. The EOG is employed to control a turn to left or right while the electro dhencephalogram (EEG) is used to control forward and backward motion, or to bring it to a halt. By using just two- channel biosignals, an average accuracy of more than 95% can be achieved, said Yunyong.   

This wheelchair for children with cerebral palsy is designed to operate in both reclining and standing positions.  Automatic control was added in the system to enhance efficiency of movement, accomplished via an automatic forward and prevention module. Infrared sensors are used to detect obstacles while the wheelchair is in motion. Line tracking is a simple, automatic forward method. The system design is suitable and takes less time to set up.  Meanwhile, a team from Thammasat University will unveil a universal standing wheelchair for children with cerebral palsy. The device can be adjusted to recline or stand erect, and it’s meant for children with weak muscles.

The wheelchair is designed for easy use. It comes with a trolley so that parents can adjust to standing position without the need to move the child.  Several other innovative items will be on view at i-CREATe 2011 that runs from July 21-23 the Swissotel, Nai Lert Park, in Bangkok, with HRH Princess Maha Chakri Sirindhorn presiding over the formal opening on July 22.

Service dogs are beyond fetching

Their use is growing. They help guide the blind, perform tasks for the physically disabled and may even help people with epilepsy and autism.

One moment 15-year-old Glen Gregos was a happy-go-lucky kid riding a motorcycle. The next he was the lucky-to-be-alive victim of a terrible accident, paralyzed from the chest down.  Now 54 and a resident of Woodland Hills, Gregos has built a rewarding life — college, marriage, a successful banking career, a daughter who just graduated from college.  Still, for decades after the accident, Gregos faced challenges every day from simple things most of us take for granted — going to the grocery store, going out the front door. And then six years ago, his life took another dramatic turn. He met Beulah — a.k.a. Miss Bo — a black Labrador retriever who has been at his side, 24/7, ever since — to open doors, carry bags, pull his wheelchair, pick up anything he drops on the floor and cheer up any black mood he falls into.

"It’s hard to put into words everything these dogs do for you," he says. "It’s physical. It’s emotional. It’s all-encompassing. You probably have to live it to understand it."  Miss Bo is not considered a pet. She’s a service dog, a concept first introduced with guide (or seeing-eye) dogs for the blind, perhaps as far back as the 16th century, though it wasn’t until 1929 that the first guide dog training school in the U.S. opened up. By the 1970s, people had started training dogs to help with other disabilities, and that trend has continued.  Service dogs now include dogs that can open cupboards and drawers, alert someone to a ringing telephone, assist someone during a disorienting seizure, help someone keep their balance or get back up after a fall, not to mention dogs that can sniff allergens in the air or low blood sugar on someone’s breath.

"Here in the U.S. we have a highly individualistic culture — creative, experimental," says Lynette Hart, director of the Centre for Animals in Society at UC Davis. "It’s like a caldron for coming up with new things that dogs can do for us. And dogs love to work. It’s a very natural marriage for them to help people."  This has been a boon for many who, like Gregos, have had their lives changed by some extraordinary dogs. But potential pitfalls abound. "There’s almost no regulation," Hart says. "And everyone wants to do what they want to do."  Sometimes people want to call their dogs service dogs even though they’re really not. And sometimes people want to believe dogs can do things even though there’s no real proof they can.

Many dogs have a natural knack for providing comfort, companionship and emotional support to their people, who often consider that a pretty big service. But it doesn’t make those dogs service dogs. Neither does a capacity for warding off crime by looking or sounding formidable. According to the 1990 Americans With Disabilities Act and new regulations put in place in March, a service dog must be trained to perform a service for a person with a disability that is directly related to the person’s disability — turning lights on and off for someone who’s paralyzed, for example, or alerting someone who’s deaf that a smoke alarm is blaring.  Many organizations train one or more kinds of service dogs, and in general their programs follow a pattern set by the early guide dog training organizations: careful breeding followed by puppy-raising by volunteers who begin the basics of obedience and socialization, and finally intensive training by professionals. (Potential human recipients also are carefully screened, trained and matched to dogs.)

Guide Dogs for the Blind, the first guide dog training school on the West Coast, relies solely on Labrador retrievers, golden retrievers and crosses of the two. Training organizations for other types of service dogs often do too. "They have wonderful temperaments," says Katie Malatino, public relations coordinator for one such organization, Canine Companions for Independence, headquartered in Santa Rosa. "They’re a good size for the tasks they have to do, and they have an instinct to retrieve, which comes in handy for picking things up off the floor."  Canine Companions for Independence provided Miss Bo to Gregos in November 2005. These days she is always on call if Gregos needs her, which is not to say that she never has any fun. "She has toys," he says. "We play ball. But once she gets vested up" — wearing the vest that identifies her as a service dog — "she knows, ‘OK, I’m ready to work.’ " (And people who see the vest should should know and respect that too.)

Like any good service dog, when she’s working, Miss Bo is unperturbed by loud or unexpected noises ("bomb proof," Malatino calls it) and undistracted by other animals or people — unless Gregos gives her special dispensation. Which he often does.  "I put her in a ‘sit’ and let people pet her," he says. "I want to create more awareness about these special dogs. I wasn’t aware of them myself for a long time. I’d think, ‘What can a dog do for a guy in a wheelchair?’ "  The Americans With Disabilities Act says service dogs get to go wherever their people go: grocery stores, restaurants, libraries, amusement parks, boats, buses, trains, planes and no-pets-allowed hotels. New regulations issued this spring establish two exceptions (which would surely never apply to Miss Bo): Service dogs can be banished if they get out of control or if they transact certain business indoors that should have been seen to outside.

Not everyone knows the rules. Gregos once spent several hours convincing officials at a hotel with a no-pets policy that they were obligated to let Miss Bo in. "One side of me thought, ‘I don’t want to stay here anyway,’" he says. "But the other part thought, ‘They’ve got to be educated.’ "  Even beyond the issue of ignorance, service dog use is not without controversy. One problem is cheaters.  "A lot of people try to skirt the system," Gregos says. "I see it all the time." Some will claim that their pet dogs are service dogs that help them with disabilities they don’t really have — and they can get away with that, because the law doesn’t require people to present proof of their own disability or their dog’s capacity to deal with it. (It doesn’t help that service dog vests are readily available online.) Proprietors may deny entrance to dogs that arouse their scepticism, and that’s fine if they’re right. If they’re wrong, it can lead to a fine of a very different kind.

Another problem is that there are no industry-wide standards for trainers or dogs, leaving disabled people on their own to determine how much they should trust an organization’s claims. "Guide Dogs for the Blind — they’re very reputable," says Dr. Melissa Bain, chief of the Behaviour Service at the UC Davis Veterinary Medical Teaching Hospital. "If they graduate a dog, OK, I trust it." But not every organization has the same long history of success.  Of course, some claims are easier to validate than others. It’s easy to see if a dog can pull a wheelchair or open a refrigerator door. But seizure prediction? "The trouble," Bain adds, "is if people rely on the dog and nothing else, that could be dangerous."  Sometimes the question isn’t whether a particular dog can perform a task but whether some tasks are even canine-ly possible. Take seizure detection again. "Is that legitimate?" Bain says. "Maybe."

In 1999, a British epilepsy specialist and a behavioural scientist/animal trainer reported that by giving dogs a reward every time their owners had seizures, they had been able to train some dogs to warn of oncoming seizures as much as 15 to 45 minutes before the seizures occurred. Their paper in the journal Seizure inspired a demand for such dogs.  Today, the Epilepsy Foundation says on its website, "while some people have been very pleased with their new canine friends, others have been disappointed." The foundation "recommends that people take great care in reviewing trainer claims and results, especially when thousands of dollars are involved."  More questions arose in 2007 when four of the seven seizure-alert dogs in a study in the journal Neurology were found to be warning people of psychological, not epileptic, seizures. Psychological seizures, caused by mental stress, can often be eliminated through counselling — without drugs — making warnings beside the point. And in one case in that study, a dog’s "warning behaviours" were found to set the seizures off.

Service dogs for children with autism have inspired a debate all their own, with some districts reluctant to allow the dogs into their schools because, they argue, the dogs cause too much trouble — other children may be scared or allergic; child and dog may require extra supervision.  But, in fact, the value of service dogs to children with autism is less controversial than it is for seizures. "One of the main things our dogs do is provide safety," says Kati Rule-Witco, executive director and placement specialist for Autism Service Dogs of America, a training organization founded in 2002 that’s based in Lake Oswego, Ore. "Often children with autism will run off. Parents have trouble just going to the grocery store. Our dogs provide a way for families to go out safely."  A 2008 study in the journal Qualitative Health Research looked at what happened when service dogs were brought into 10 families with children with autism and found that they did, indeed, enhance safety and facilitate public outings. When the child and dog go out into the community together, the dog is tethered to the child but also connected to the adult caregiver since that’s who holds the dog’s leash. Autism service dogs are also trained to keep their cool no matter what their young charges do (hug, squeeze, lie on top of the dog) and to take positive steps to cope with negative behaviour (nudge or lean against the child, maybe even stop the child from hurting himself).

All of this costs money, a lot of it. That’s true for training any service dog. Some organizations — like Guide Dogs for the Blind and Canine Companions — can operate on donations alone. But not all. Autism Service Dogs of America says the average cost for breeding, raising, training and placing one of their dogs is $20,000, $13,500 of which families are required to pay before they are placed on the waiting list for the next available dog.  The website for Autism Service Dogs of America has testimonials from 10 satisfied families who use words like "awesome" and "miracle" to describe their dogs and the jobs they do. They firmly believe that their money was well spent. But not everyone is convinced.

Bain notes that research so far has not compared service dogs to ordinary family dogs, and she suggests the latter might do just about as well. "Maybe a child feels better sitting next to the dog," she says. "There’s no way to tell if special training does any good."  Gregos has no such questions about the good that Miss Bo’s special training has done for him. But she’ll be 8 in August, and the time is coming when she’ll need to retire and he’ll need to get a new service dog. Then Miss Bo will change from service dog to pet dog and spend the rest of her days with the man who says that having her has been "magical since Day One."

By Karen Ravn, Special to the Los Angeles Times

“You move forward in life with your intellect and thoughts, not with your legs,” Neeta Panchal

I first saw her when she wheeled herself into the coffee shop of the hotel I was staying in Ahmedabad. She and her husband made an interesting sight! People who had come down for dinner stopped in their stride. Her husband on crutches with their baby boy in a sling tied on his chest and she following on her wheelchair. It was endearing, if not anything. And then when she starts talking and you get to know her, you realise she is a bundle of energy with a zeal for disability rights. Her vivaciousness is infectious. Meet Neeta Panchal of Disability Advocacy Group, Gujarat as she shares her story with Dorodi Sharma of D.N.I.S.

D.N.I.S.: You acquired your disability when you were barely 17 years old. Can you tell us about the incident?

Neeta Panchal: It was during the huge earthquake that ravaged Gujarat on Republic Day in 2001. I was 17 years old at that time and was on my way to school along with 7 other girls. Suddenly, the earth shook. Since we stayed very close to the Pakistan border, we thought that it must be a war that had started. Unknowingly, we rushed into a building to escape what we thought was a bombing, only to realise that the whole building was crumbling down on us. My friends died. I was caught between two of them but somehow I survived.

I was trapped in the rubble for more than four hours. When they were pulling me out, I couldn’t feel my legs anymore.

D.N.I.S.: How did you overcome the trauma?

Neeta Panchal: It wasn’t easy. When the doctors kept telling me that I had been badly injured and that I was paralysed waist down, I was still hopeful. I thought I was in a hospital after all and I would get well soon. Finally after spending more than a year there, I realised that this was serious, that I would not be able to walk ever again in my life. It shook me. I went into depression. At that time I was also engaged to be married. When the boy’s family found out that I had become disabled, they broke off the engagement. I tried to commit suicide twice. Luckily, my family rallied on to get me out of that mindset. My brother especially. He showed me Sudha Chandran’s film called ‘Nache Mayuri’ which is her story about being a dancer despite losing one leg. Slowly, I came out of my depression. I realised that if God has saved my life, He probably had a reason.

D.N.I.S.: How did you decide to join the sector?

Neeta Panchal: That happened much later. The earthquake had taken a toll on my family. I lost my sister and grandmother. We lost our house and all our belongings. We had nothing. To top that, my family suddenly had to look after me. I did not want to be a burden. So I started a small shop of imitation jewellery and then moved on to open a P.C.O. By this time, I was friends with my disability. In 2004, I participated in the National Para Games in Bangalore and won a silver medal in wheelchair race. In 2006, I won the gold medal in the same event. It was only after I came to Ahmedabad that I entered the disability sector.

D.N.I.S.: You have a very interesting love story – almost straight out of a romance novel. Please do share how it all began.

Neeta Panchal: Well, Handicap International (H.I.) conducted rehabilitation camps in Kutch after the earthquake – teaching us basic daily activities, etc. I had several surgeries after the earthquake (Neeta has had 22 surgeries till date and calls the operation theatre her ‘home theatre’!). I needed to come to Ahmedabad for one such surgery. I did not know anyone here and my family was also from a very simple background and was not sure about managing things in a big city. I sought H.I.’s help. Parag (Panchal) who works with H.I. was asked to help me. That’s how we met and fell in love in the hospital.

But our families were dead against this match. Parag’s family because I was more severely disabled than him (Parag is orthopaedically impaired because of polio) and mine because they did not know anything about Parag. We went ahead against our families’ wishes and got married in the hospital on May 25, 2006.

D.N.I.S.: Did you families reconcile to this? Were there any problems?

Neeta Panchal: Our families reconciled to our marriage but there were other problems. My in laws’ house was not accessible. Parag walks with the help of crutches and he could move around the house. I am a wheelchair user and there were places within the house which were inaccessible. We had to get a place of our own. We spent all our money on it. There were days when we did not know where the next meal was coming from.

D.N.I.S.: You also have a two year old son. Being a paraplegic, what difficulties did you face during your pregnancy?

Neeta Panchal: Several doctors told me I was crazy to think of conceiving. Finally I went to a doctor in a Government hospital. I told him that he does not need to worry about my decision and asked him to guide me through my pregnancy. I was confident that I could have a baby like any other non-disabled woman. It was not easy though. The delivery was even more difficult. There were some 20 plus doctors in the operation theatre. But inspite of everything, today I am a proud mother.

D.N.I.S.: How did Disability Advocacy Group (D.A.G.) happen?

Neeta Panchal: Parag works at H.I. and I also got involved with a lot of activities that they do. We soon realised that there was no forum for people with disabilities in Gujarat. There were big organisations working for disabled people while the latter were just ‘beneficiaries’. A group of us decided to form a platform which any person with disability can access. That is how the idea of Disability Advocacy Group (D.A.G.) happened. It was established with H.I.’s help and support. It was an informal network for a few years till we finally registered it in 2009. We now have 2,400 members across Gujarat. Everyone at D.A.G. comes in her/his individual capacity. We do not believe in the tag of an organisation. Our only identity at D.A.G. is that we are people with disabilities.

J.L. Nakum of Jamnagar is currently the President and I am its Secretary.

D.N.I.S.: What does an average day in Neeta Panchal’s life look like?

Neeta Panchal: Very ordinary! I have made my entire house accessible. I do all my household chores from cleaning to cooking on my own. D.A.G. does not have an office yet. I do all my D.A.G. related work from home. Doctors keep telling me to slow down – I still have a lot of health issues but then I got to do what I got to do.

D.N.I.S.: Any message for our readers?

Neeta Panchal: I think disability is in one’s mind. I have learnt a lot in the last 10 years. I was a simple girl from a remote part of Gujarat. Today I have participated in so many national and international events and have got to meet so many interesting people. I couldn’t speak anything but Kutchi language earlier, today I speak Hindi and broken English. I have come a long way. Of course, all this would not have been possible without the support of my family, my in laws and my husband. People today look upto me as a role model. What more can I ask? Zindagi me pairon se nahin, dimag se chalna! (You move forward in life with your intellect and thoughts not with your legs.) Everything happens for good.

DNIS

Working Paper on the UN Convention on the Rights of Persons with Disabilities, February 2011

By Council of Canadians with Disabilities and Canadian Association for Community Living

WORKING PAPER OVERVIEW

The Council of Canadians with Disabilities (CCD) and the Canadian Association for Community Living (CACL) have developed a Working Paper, The UN Convention on the Rights of Persons with Disabilities: Making Domestic Implementation Real and Meaningful. The intention of the paper is to spark dialogue on implementation of the CRPD and propose concrete actions for consideration.
These actions include:

A. National mechanisms for implementation, monitoring and reporting
To deliver on the intent of the CRPD and to meet the obligations in CRPD Articles 4, 33, 35, the Government of Canada should:

• Establish a High-level Federal Focal Point and Coordination Mechanism to Implement the CRPD
• Demonstrate Federal Policy Leadership on key priorities of the disability community (see below)
• Create a Parliamentary Committee for input and leadership
• Ensure an Independent Monitoring Mechanism – to measure progress and impact
• Establish a process for Canada’s first Comprehensive Report to the UN on the CRPD (due in 2012)

B. A robust participation strategy

• Design a robust participation strategy to ensure Canada meets its obligations in Article 4 to “consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations” in implementing the CRPD.

C. A national framework for implementation

• Design a National Framework for Implementation, or a National Action Plan, to ensure Canada meets its obligations in Article 33(2) and to provide the vision and overarching framework for successful implementation of the CRPD. A detailed implementation action plan would identify necessary mechanisms for collaboration, benchmarks for monitoring and reporting, and strategies for priority areas for action the disability community has identified, including:
• Access to disability supports
• Poverty alleviation
• Labour force participation
• Accessibility and inclusion
• Canada’s international leadership

D. A public and transparent review process

• Canada included a reservation on Article 12 with its ratification and has not yet signed or ratified the Optional Protocol. The Government of Canada should establish a clear timeframe and process to review its position on Article 12 and the Optional Protocol.

Our Immediate Call-to-Action for the Government of Canada and Parliamentarians:

1. The Government of Canada should:

• Create an advisory panel, with representation from national disability organizations, to explore how to move forward the actions identified here. The creation of such a panel would be a first step in meeting Canada’s obligations to the CRPD.

2. Parliamentarians should:

• Endorse and support the convening of Parliamentary hearings on the CRPD. The hearings should be convened as soon as possible and should include representatives from disability organizations as key witnesses.

Abilities.CA

Doctors must be trained to communicate with the deaf

An advocate for the hearing impaired community is calling for doctors and health workers to be trained in Jamaican sign language so that they can communicate effectively with their deaf patients.

Deaf Community Leader, Rian Gayle, who was participating in a panel discussion organised by the Jamaica Association for the Deaf (JAD) on February 17 at the Alhambra Inn in Kingston, said that communication has proven to be a serious barrier between the deaf patient and the health system. She said that a number of deaf persons are avoiding healthcare because of the fear of embarrassment over not being understood. “Deaf people in our community avoid going to health services. They’re having difficulties when they go in (to the doctor), because they feel that the professional does not understand them when they try to communicate and it is not worth going,” Miss Gayle told the audience.

She said that instead of going to the doctor, unfortunately, many deaf persons resort to taking advice from untrained family members and friends, which often puts them at further risk.

She also recommended that other critical service providers, such as lawyers, court workers, and law enforcement personnel receive similar sign language training.

Miss Gayle, who is also a Research Officer at JAD, said that the deaf community is also being side-lined in the media.  “There is no captioning here on the TVs in Jamaica. It is so crucial, because as vital information is coming in from the government, such as hurricane warnings, without captioning, the deaf people are without that information,” she lamented.

Miss Gayle noted that while newspapers may share some positive incites about the deaf, they also help to perpetuate negative perceptions of the community. Citing the use of the word ‘dummy’ in the headline of an article published in a popular Jamaican newspaper, she stated that this is “a totally inappropriate and offensive term to use in describing members of the deaf community.”  Minister of Religion and talk show host, Rev. Garnett Roper, who also participated in discussion, shared Miss Gayle’s concerns over the absence of television captioning for deaf people.

“As a matter of right, not as a privilege, they need to be spoken to. As a minimum, caption use must govern all television presentations. It takes nothing off us,” he said, noting that sign language interpreters should be a permanent fixture on the news.  Legal Officer in the Ministry of Labour and Social Security, Carla Roper, further spoke of the need for the proper training of persons in the legal system so that they can effectively communicate with persons in the deaf community.

He informed that the Justice Training Institute has implemented such a programme, which he said, was a good start. Other maters coming out of the discussion include: the need for quality trained teachers and interpreters; relevant legislation to protect the rights of deaf people; rights-based approach to educational provisions; and the elimination of negative perceptions about the deaf. Other panellists were: Executive Director, Combined Disabilities Association, Gloria Goffe; Director of Family Health Services in the Ministry of Health, Dr. Karen Lewis-Bell; and Head of the Centre for Disability Studies, University of the West Indies, Mona, Floyd Morris.

Deafway Times

Disabled, gay, and as normal as you

Being disabled and finding your place in ‘normal’ society is tough. But for those who are both disabled and gay, getting ‘accepted’ is doubly difficult. Uttarika Kumaran meets Dinesh Gupta, a homosexual suffering from osteogenesis imperfecta

DNA Uttarika Kumaran

On Saturday, at the Queer Azadi March in Mumbai, thousands from the Indian LGBT (lesbian, gay, bisexual and transgender) community poured onto the streets to show the city once again — lest it forgets — that they exist. But 37-year-old Dinesh Gupta opted out. “I doubt I’d have been able to walk that far or for that long,” he says. Dinesh was born with a genetic disorder called osteogensis imperfecta, which causes bones to break easily, often with little or no apparent cause. His first fracture was when he was two-months old, and by the time he was 13 Dinesh had suffered 14 fractures on various bones below his waist. One of these fractures left him disabled. But once he reached puberty and his bones matured, the fractures stopped.

Only, something else happened. Dinesh began to feel a distinct attraction towards men and realised he was gay. “The same hormonal changes that halted the fractures also aided my sexual development. In a way, I’ve always felt I am alive because I’m gay.”

Shared history

Historically, both the gay and the disability rights movements have stemmed from a common resistance to what is considered ‘normal’ in society. By challenging the acceptance of heterosexuality as the norm, people with alternate sexualities often claim to be ‘socially disabled’. Disability rights activists too have struggled to overturn barriers that give preference to a particular social construction of the body. At times, the two movements have crossed paths. In 1983 in Minnesota, US, Karen Thompson began an eight-year-long battle to gain access to her live-in partner Sharon Kowalski who was disabled after a car accident and remanded to the guardianship of her parents who denied Thompson visitation rights. With support from the gay and disabled communities, Thompson finally acquired legal guardianship of her partner in 1991.

In India, the concerns of the gay and disabled movements have been independent of each other. Popular culture too has seen very few and narrowly explored meeting points. In 1964, the Hindi film Dosti, directed by Satyen Bose, portrayed the friendship between two boys rejected by society — one blind and the other a cripple, and has since been appropriated in queer readings of Hindi cinema as a metaphor for homosexual repression, but nothing more.  It was another Hindi film in 2008, Dostana that threw homosexuality into the limelight and convinced Dinesh to come out. The media lapped up his story, but neglected to ask a crucial question — does being disabled colour his experience as a gay man? 

Bare truths

Being practically bed-ridden while growing up, it took years before Dinesh could confront his sexuality. Studying at home, he completed his graduation and later underwent a surgery that greatly improved his mobility. It was at 26, when he started to venture outdoors on his own that he began to meet men and slowly gain confidence.  Despite the relative openness regarding alternative sexual behaviour in Indian society after the 2009 High Court ruling, there has been a stony silence about sexual practices  among the physically disabled. In a society where beauty is held in utmost regard, the physically disabled are at an immediate disadvantage. Priti Prabhughate, research director, Humsafar Trust, says, “Even among able-bodied people in the gay community, self-esteem over body image seems to be an issue. For the disabled gay person, it can be doubly difficult.”

Dinesh says matter-of-factly, “I’ve never had a gay partner. Some are bisexual. Many claim to be straight and say they choose to be with me for a short while out of pity. Even if that’s true, I’m okay with it because I do have physical needs.” Dinesh maintains that he would prefer an able-bodied partner over a disabled one.

Invisible men

“I would like to reach out and tell my story so that more people like me know they’re not alone. I applied to get on Sach Ka Samna but they didn’t select me. Then I wanted to be on Raaz Pichle Janam Ka. I’m still waiting to hear from them,” says Dinesh.  In March 2006, while still in the closet about his sexuality, Dinesh read about Manvendra Singh Gohil, the prince from Gujarat whose coming out made headlines across the world. In August the same year, Dinesh attended his first community programme at Humsafar Trust, a networking and advocacy group serving the needs of the MSM (males who have sex with males) and transgender communities in Mumbai. He says, “I felt immediately accepted. I heard their stories. I wasn’t aware there were so many like us out there.” Yet, five years on, Dinesh has yet to meet another gay man with a disability like his.

Unlike the emergence of gay icons and the concept of ‘gay pride’ that have given the queer movement media visibility, the disability rights movement has failed to generate the same curiosity. “Forget media visibility, Mumbai is among the most disability-unfriendly cities,” says Rohini Ramkrishnan, researcher at the Disability Research and Design Foundation, “How often do you see a physically disabled person comfortably using the train or bus? Right now, it’s like they don’t exist. We just put them in rehab centres and pretend they’re not there.”

United, we stand “Disability points to an obvious bodily impairment which influences every aspect of one’s interaction with society. The experience of homosexuality is not as disabling on an everyday basis,” explains Srilatha Juvva, associate professor, Centre for Disability Studies and Action, TISS.  Other disability experts feel that the immense cost of making structural adjustments — such as installing ramps in public places — has resulted in their rights being ignored, including rights pertaining to sexual health. “I feel that the government’s HIV efforts don’t consider how a physically disabled person has sex. How then will you tell him/her to be safe?” asks Prabhughate of the Hunsafar Trust.

One of the main reasons for the success of the queer movement has been the alliance of sexuality and gender-identity based communities under one umbrella-term called LGBT. A similar model in the disability rights field, especially in the wake of the framing of the UNCRPD & Disability Act 2010, seems the need of the hour. In the meantime, ask Dinesh whether he identifies with his gay identity or his disabled one, he replies, “I’m proud to say I’m gay.” Some day, he might be proud to say he’s disabled too.

DNA

Initial comments and observations on the new draft law

Of late, I have finished taking a quick and cursory look at the new draft law (the working draft as it has been aptly described) which has been updated following conclusion of the last two-day meeting of the new law committee constituted for the purpose of developing a new legislation to replace the existing PWD Act.

I have been receiving any number of telephone calls from friends and activists in the disability sector requesting for my personal and initial views/comments/observations. In view of this, I hereby take this opportunity to share my initial comments/observations/views with three riders: namely, that these views are mine and that they do not necessarily reflect the views of any organization/institution that I may be associated with; That I reserve the right to express further comments/views ETC.; and, that, these views/comments are based, as stated above, on a very quick and cursory reading of the latest working draft and that I need to read the same with greater circumspection, and in greater details.

My immediate and intimate feeling on completing the first quick and cursory reading of the said working draft is that it is not a document speaking for persons with disabilities, it is persons with disabilities speaking for themselves. I wish to whole-heartedly compliment all concerned including my highly esteemed friend Dr. Amita Dhanda under whose active and able guidance her spirited team at Nalsar have put together a brilliant masterpiece of a draft following receipt of inputs from the new law committee. I must also congratulate the Committee chairperson Sudha Kaul and all the members of the committee for the hard work they put in and also for the generosity and cool-headedness demonstrated by them even in the face of all kinds of discombobulations. To my mind, the keenness of the committee and also of the legal consultant in valuing interactive dialogue with the sector is above board.

The depth and intensity of the vision of the working draftcan be better appreciated and felt as one runs through its pages with unqualified openness and unquestionable objectivity.

All this, however, is not at all to suggest that I do not have differences or disagreements at all. Yes, in places, the working draft appears to be overly radical, almost oblivious of ground realities, especially, in respect of  legal capacity to act in relation to persons belonging to certain specific categories of disabilities. Yes, it seems to have become a little too bulky and voluminous, and even unwieldy. Yes, the language and the format perhaps needs fine-tuning in order to ensure that it becomes legally and legalistically more sound.

I would also like to express my satisfaction over the fact that some of my suggestions put forth by me verbally to the person concerned only on the basis of taking a look at  some portions of the first draft brought out on the 20th of the last month have been taken care of in the current draft. These include insertion of a reference to UNCRPD in the Preamble, use of the expression “lifting/eliminating the barriers”,  in place of the expression “lowering the barriers” ETC.

Having said the foregoing, I would like to make the following initial observations/comments in an attempt to facilitate further critical and constructive reflections

• Legal capacity:  I favour the adoption of the minimalist model of legal capacity which, among other things, must recognize all persons with disabilities as persons before the law on an equal basis with others and also recognize legal capacity of persons with disabilities together with provision for support for whosoever needs that support. Such support should only be for the period, and, to the extent needed by the person concerned. Provisions for safeguards against any possible abuse of support and other relevant matters must be duly incorporated. To my mind, complete and explicit elimination of substitutive support in respect of legal capacity to act in relation to persons belonging to certain specific categories of disabilities  may not be fair and proper. Certain specific condition of certain persons may warrant substitutive support. Experience tells us that some persons in some situations or condition may not even be able to nseek support all by themselves. They b need support even to seek support. Provision only for non-substitutive support for all situations and conditions is replete with danger. Imagine a situation assuming that there is absolutely no provision for substitutive support — What happens if a supporting person/network commits a serious lapse resulting in irreparable and substantial loss to the concerned person with disability, and then takes the plea that the decision was his (concerned disabled person’s), and that the supporting person/network was only supporting that concerned disabled person in taking the decision but the ultimate decision was his. Thus, the supporting person/network may get away with impunity.  To my way of thinking, legal capacity has two components, namely, that one is recognized as a person before the law, and that one is presumed to have the ability and the maturity to comprehend the nature and possible consequences of a given action. In a situation of this ilk, one just can’t have the cake and eat it too. Besides, despite absence of criminal intent, how does a person with very profound intellectual/developmental/psychosocial disability accused of an offence  take recourse to the plea of Mens Rea when the full legal capacity to act of such a person is recognized necessarily though unjustly and erroneously implying that he had the ability and maturity to comprehend the nature and possible consequences of the action she/he might be accused of? I feel that each one of us, regardless of ability or disability may need substitutive support as well. Assuming, (not admitting), that I am in a state of coma and the surgeon concerned has to perform on me a critical surgical operation which may prove fatal. Someone close to me has to decide for me. Is this not substitution? If not, what else is? For such and other like reasons, I feel that while there should be explicit provision for making all-out efforts to promote non-substitutive support, substitutive support need not and should not be altogether done away with.
  The UNCRPD also talks about support wherever such support is needed; and support can be both substitutive and non-substitutive; Otherwise, what prevented the framers of the UNCRPD to impose an explicit and  blanket ban on substitutive support? While it is all right to be surcharged with idealism, it would be prudent if the working draft reflects a more judicious combination of idealism and pragmatism.
• Disability Rights Authority (DRA):  The DRA is a very well-conceived concept albeit it needs modifications so as to be in harmony with the contents/views expressed in 1 above. The reason is not far to seek and hence, is not elaborated. After going through the powers, functions and the structure of the proposed DRA with meticulous care, I strongly feel that the proposed DRA must be set up under a separate/exlusive/dedicated statute which may be called “The Disability Rights Authority Act —“. This suggestion is being put forth given the comprehensive nature of DRA’s mandate, its powers and functions, and also its elaborate structure. Please allow me to disabuse the minds of those who feel that the DRA is intended only as a recommendatory bodywith no teeth. My reading of the proposed DRA concept leaves me convinced that it wil have ample powers ample participation of experiential and subject experts, and a number of bodies functioning under its direct supervision, control and guidance.
• Chief Commissioner and state and district Commissions: Please exercise caution and guard against the interchangeable use of the expressions “Commission” and “Commissioner” in relation to the states and districts. Even the corrected/updated draft in one or two places uses these expressions interchangeably. The proposal for a Chief Commissioner at the national level, and Commission at the state and district levels is innovative, imaginative, and it would be interesting to see how it works.
• Education: The chapter on education has been very comprehensively drafted and rightly so. While it justly and emphatically provides for inclusive education at all levels, it also mentions/recognizes the so-called special schools. However the mention/recognition of the so-called special schools has happened only in whispers and not with the kind of emphasis it merits. Therefore, there is a definite and distinct need for explicit provision, among other things, for concurrently creating and promoting more disability specific schools and strengthening the existing ones on modern and scientific lines. Such explicit provision is  necessary despite an already incorporated provision in the working draft in respect of providing education in environments that maximize academic and social development.
  Anyways, we already have exclusive schools in relation to some other non-disability areas which is fair enough as long as one gets quality education; and, assuming for a moment, that we don’t have such exclusive schools for others, nothing should stop us from incorporating what is needed. I feel that since persons with disabilities are recognized as a part of human diversity and humanity, there is little justification for encouraging the use of the expression”special schools”. Instead, we should use the expression “disability specific school”.
• Employment:  I immediately find little scope for commenting on provisions relating to employment as reflected in the working draft. However, I emphatically feel that the justification which merit reservation in promotion for SC and ST communities also applies at least, in equal measure, if not more to persons with disabilities. Hence, it is important to underscore the need for bringing about necessary amendment in the Indian Constitution as was done in the case of SC and ST communities. In some place which I am immediately unable to locate, the working draft while providing for safeguards  states that no person shall be discriminated “merely” on ground of disability implying thereby that disability could be one of the grounds, though not the sole ground of discrimination.  Therefore, Please delete the word “merely” if it still exists in the updated draft. In order to address the concerns of persons who happen to be totally blind, a portion of the reserved quota of jobs should be earmarked for them out of the reserved quota for the blind and the low vision.
• Accessing justice:  Relevant provisions are very well conceived. Just incorporate a strong provision for fast-tracking of all cases at all levels involving persons with disabilities.
• Definitions: Just one thought: This is in relation to the generic definition of persons with disabilities which is almost the same as given in Article 1 of the UNCRPD with the lone exception that the expression “long_term” has not been retained. Will this be prejudicial to the interests of the genuinely disabled?

This definition, and also the defition of “reasonable accommodation” and a number of other provisions leave me convinced that the working draft, in a certain sense, is

way more radical/progressive than even the UNCRPD.

My views in respect of the need for having a more progressive and forward looking common law compared to the current PWD Act and also the need for having additional and specific legislations to address highly specific issues of the more marginalized groups within the larger group of persons with disabilities are so well-known that they perhaps do not merit at least immediate reiteration. Common law to addres commonalities, and specific laws, to address specificities depending on need and necessity is my view. I do not favour the idea of clubbing/merging the existing laws into one Act. To my humble way of thinking, it is so utterly wrong to allege, as some seems to have alleged that the new law committee has violated its mandate. In fact, the new law committee was neither mandated to suggest repral of any laws nor to club and merge all disability specific legislations into only one legislation.

Be that as it may, it would also be in the fitness of things to suggest some amendments in the Indian Constitution to strengther the rights regime for persons with disabilities. Suggestions for such amendments must include amending of Articles 15 and 16 so that disability gets included as one of the prohibited grounds of discrimination. I am aware that suggesting constitutional amendments, strictly speaking, is not within the ambit of the new law committee’s mandate; yet, one perhaps can take this reasonable freedom.

Some more random thoughts: I am not too sure whether insertion of a definition of “barrier” will necessarily work to our advantage. Sometimes, leaving some grey areas is perhaps more advantageous. Some other times, however, it is necessary to define and demystify some expressions. For example, in my view, if any model other than the minimalist model of legal capacity is insisted, then, in my considered view, legal capacity will necessarily have to be defined and demystified.

The working draft is unique in more ways than one. I am particularly impressed by the insertion of principles of implementation and interpretation. The author has made an ingenious attempt to retain the positive jurisprudence which has been built over the years.

To allay the fears expressed by some of our friends, let me state in no uncertain terms that the current workin draft does also adequately address the concerns and aspirations of those persons with disabilities who live in the rural and remote areas. The fact of the matter is that the working draft is so all-encompassingly inclusive.

To be fair to the author of the working draft, we must not fail to appreciate the highly challenging nature and also the enormity and stupendity of the task considering that intricate diversities and diverse intricacies do exist within the larger group of persons with disabilities. It was no mean task; and, yet executed with remarkable sensitivity and alacrity.

I am afraid the Govt. may not accept this kind of a draft in toto; it nevertheless, will continue to have an immensely educative value.

I feel that we need to critique this brilliantly conceived working draft with the objectivity and openness that it merits keeping in mind our  best interests as persons with disabilities, and  putting aside our egos to the extent possible. Such critique should invariably be constructive and in good taste. If some people still choose not to eschew condemnatory language, all I wish to say is this: Just come up with an alternative and matching draft so that one is able to compare and contrast and come to a certain view in respect of the matter.

Well done, amita, well done Nalsar team, well done Sudhaji and the new law committee!

Best regards, 

Prasanna Kumar Pincha



Are we creating new institutions for people with disabilities?

We are delighted to welcome this guest post from Noelin Fox.  Noelin is a Ph.D candidate in the Centre for Disability Law and Policy, NUI Galway.  Her research examines the right to independent living provided for in Article 19 of the UN Convention on the Rights of with Disabilities. Noelin has worked for many years in intellectual disability services’ in Ireland.

On October 20^th John Moloney, Minister of State for Health officially opened ten new houses for people with intellectual disability in the ground of St Ita’s psychiatric hospital in Portrane, County Dublin.  The houses will provide accommodation to 60 people with intellectual disability who are long-term residents of St Joseph’s Intellectual Disability Services in the hospital. See the Irish Times Report here.  The need to provide more appropriate accommodation for people with intellectual disability housed in the State’s long stay psychiatric facilities has been recognized for several years by the HSE and the Department of Health and Children.  In addition the families of people living in St Ita’s have campaigned for many years for proper accommodation for their family members.  As such, this development must be welcomed as a vast improvement on the conditions which pertained in the hospital.  The development is part of a wider deinstitutionalization strategy articulated in the government’s mental health policy document Vision for Change.  The strategy aims to see an end to all of the older long-stay psychiatric hospitals in the State and their replacement by community-based alternatives for people with mental illness and people with intellectual disability.  Minister Moloney in his address stated that the work completed in St Ita’s would be replicated throughout the country.

There are some aspects of this development which are worrying.  It is widely recognized that large institutional settings represent a breach of the fundamental human rights of residents.  However, can we be sure that newer more modern buildings, which accommodate groups of people with disability, in the ground of these old institutions represent the necessary reforms?  Are the State’s obligations to promote and protect the human rights of individuals being realized in these newer settings?  Ireland has signed up to several international treaties enumerating these rights – at UN level these include the International Covenant on Economic, Social and Cultural Rights (CESCR).  Most recently Ireland has signed, but not yet ratified the UN Convention on the Rights of Persons with Disabilities – the government has signalled its intention to ratify the CRPD when new legal capacity legislation is enacted.

1. Right to Adequate Housing

In terms of human rights the right to adequate housing is recognized in the CESCR at Article 11.  This convention explicitly applies to everyone and defines the right to ‘adequate housing’ as including not just an assurance that housing will be habitable but also that people have security of tenure and that it be located so as to ensure access to employment options, health-care services, schools, child-care centres and other social facilities.  (See UN Office of the High Commissioner for Human Rights, The right to adequate housing (Art.11 (1)): 13/12/91. CESCR General comment 4. (General Comments)).  Does the new development provide security of tenure?  Does the location ensure access to community facilities?

2. Congregated Settings Report

The report of the HSE ‘Congregated Settings’ working group Time to Move on from Congregated Settings: A Strategy for Inclusion is due to be published over the coming months.  The key tasks of this group were to identify the numbers of people with intellectual disability living in congregated settings, to outline a framework to guide the transfer of people to the community based on international best practice and to identify the likely costs of this.  From the point of view of the development in Portrane and its proposed replication across the State it is significant that the report (which was due to be published at the end of 2009 and was leaked to the media in July this year) defines a congregated setting as one where ten or more people share a single living unit or where the living arrangements are campus-based. The building of accommodation in the grounds of an existing psychiatric hospital or other institution must raise questions about the level of integration possible with the local community.  Does this represent just another form of segregated housing for people with disability – albeit of a better physical standard?

3.  UN Convention on the Rights of Persons with Disabilities

Although Ireland has not yet ratified the CRPD the intention is that this will happen in the not too distant future.  Article 19 of the CRPD defines the Right to Independent Living and Inclusion in the Community.  The core elements of this are the right to choose where and with whom to live and not to be obliged to live in any particular living arrangement and the right to supports to ensure access to community.  Although the people moving to the new houses in Portrane had choice about whom among their fellow residents they wished to live with, this surely is a very limited choice.  It is questionable whether a policy of building residences to accommodate groups of people with disability in the grounds of old institutions can ensure that the States obligations under Article 19 of the CRPD will be met.  Can such arrangements ensure that people have real choice about where they live or with whom?  Are ex residents not obliged to live in the new houses built for them?  Can such housing ensure that people have access to the local community?

There is a real danger that in moving people from large institutions to alternative grouped living arrangements, especially where these are located in close proximity to existing institutions, that we will create new mini-institutions which replicate many of the features of the old, and which will have to be deconstructed in years to come.  The challenge facing us is how do we take account of the real wishes and needs of people with disability who have been institutionalized for many years and ensure that they can lead the lives of their choosing in the community.  A first step in this must be providing access to mainstream housing in the community.  One must ask why we are building more ‘special needs’ housing when there is a surplus of regular housing available in regular communities.  The provision of specialized or generic community-based supports to enable people to live in their own home will involve a re-examination of how such supports are currently configured.

Human Rights Ireland

Kansans To Vote On Voting Rights of Kansans with Mental Illnesses

Right now, the Kansas legislature has the authority to prohibit someone with a mental illness from voting. Next Tuesday, voters will decide whether or not to change that. Constitutional Amendment Two, as it’s called, has not met much formal opposition, but proponents say a victory would still be extremely significant.

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Kansans with mental illnesses have been voting without state constitutional protections for decades. It was no big deal. Until about two years ago, when Rocky Nichols, director of the state’s disability rights centre, was working on a case involving the voting rights of a client with an intellectual disability.

"And I said, well, let me check the constitution. So I went to the suffrage provision and read it, and found out that there’s no prohibition for a person with an intellectual disability, but there is a potential prohibition for a person with a mental illness," says Nichols. "And it just hit me like a ton of bricks. I was just shocked."

Section two, article five of the Kansas constitution states ‘the legislature may, by law, exclude persons from voting because of mental illness, or commitment to a jail or penal institution.’
Nichols says what ensued after sharing what he learned with others in the mental health community was a groundswell of support to try and eliminate the prohibition. The campaign’s been largely funded by the Health Care Foundation of Greater Kansas City, which underwrites health reporting at KCUR.

Kansas is not the only place that includes such language about mental illness in its books. And a century ago, referring to people as idiots or insane within areas of voting restrictions and other legal issues was the norm. In fact, the Kansas legislature removed that language from article five in the mid seventies, but then replaced it with the term mental illness.
Still Lewis Bossing, a senior attorney at the Bazelon Centre for Mental Health Law, says in recent years, many states and the federal government have been moving away from statutes that exclude general groups of people – like those with disabilities – from voting.

"As a country, we’re moving toward a recognition in our voting laws that people with mental illness should have the same right to vote that everyone else does," says Bossing. "It’s a crucial distinction to note that for the most part, people with mental illness at most times are capable to make a choice. And for state governments to take away that right based a categorical blanket kind of concern about the impropriety of voting or some voter irregularity is simply a form of discrimination. There are a lot of people without mental illness who come into the voting process without a lot of information or perhaps without having given it a lot of thought. I don’t think there’s a reason to classify people with mental illness as having harder times making the choice than anyone else does."

To date, Kansas has not actually acted on its authority to prohibit people with mental illnesses from voting. Bossing says with the passage of legislation like the Americans with Disabilities Act, courts would likely overrule any attempt to do so. That happened several years ago in Maine, after voters twice rejected a measure to amend similar language in their state’s constitution.

Local advocates say they still view the language as a potential threat here, and concerns over public perceptions of the issue have many out this campaign season.

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Cherie Bledsoe faces a crowd of about seventy five at an Amendment Two rally in Overland Park. She says she’s struggled with mental illness but, has gotten help and since recovered. She now directs a consumer organization and says it’s crucial for the state to clean up the threatening language of the constitution.

"It stigmatizes those of us with mental illness. It furthers the discrimination, the disrespect, fear and misunderstanding that surrounds mental illness," says Bledsoe. "It gives a false impression of our capabilities and makes assumptions that paint a negative picture of people with mental illness."

Mark Wiebe, the rally’s M.C., and director of Wyandotte Centre, tells the crowd the issue is one that directly and indirectly affects just about everyone.

"Mental illness can strike anyone at anytime," says Wiebe. "Consider this: one in five Kansans can be expected to have a mental health disorder in a given year. That comes to more than half a million Kansans. It includes people with post traumatic stress disorder and many other disorders. Think about that last illness, PTSD. It can affect anyone who experiences a traumatic incident, but it’s most often associated with victims of sexual assault and soldiers returning from combat."

Weibe says the constitution’s language is of another era, when people didn’t know what they do today about mental health. He sees the change as part of a larger shift in the way society views and cares for people with mental illness.

Whether or not others see it that way, has yet to be determined…at least until next Tuesday, when Kansans take to the voting booth.

KANSAS CITY, KS (KCUR)

Reform long overdue in state-run disability care facilities

Sunday’s article by Sam Roe and Jared Hopkins about the deaths at a Chicago nursing facility for children and adults with severe developmental disabilities ("Children with disabilities die on care facility’s watch," Oct. 11) is shocking but all too familiar in the disability rights community. The individuals who have died at this facility–13 during the past decade–are the most vulnerable in society. They are individuals with significant, multiple impairments who depend fully on the skill, attention and goodwill of their caretakers. Look at the photos of the dead children printed alongside the article. Read their names. Notice that their parents are described as indigent, in prison, unable or unavailable to advocate for their children. Then read that the Illinois legislature recently exempted facilities like this one from recent nursing home reforms and, according to the article, there was no lobbying to include these facilities in the reforms.

Unfortunately, Illinois has a long history of institutionalization, exclusion and neglect of people with severe developmental disabilities. Placement of children with significant disabilities in separate facilities and segregated schools occurs in Illinois at a rate greater than the national average. Families with the fewest resources see their children living in facilities like this one, where staff members assume equipment alarms aren’t working without bothering to check them, where working alarms are turned down so low they can’t be heard and where staff are overworked and forced to take shortcuts that compromise safety.

Even children who are not medically fragile face the likelihood that they will be hidden away from other children during much of their school day. Nationally, Illinois consistently ranks near the bottom of all states when it comes to educating students with intellectual disabilities in the same schools and classrooms with other students. When compared to the national average, more special education students in Illinois ages 6 to 21 receive over 60 percent of their services outside the general education classroom.

Roe and Hopkins’ reporting illustrates the complex network of factors contributing to the deaths of these 13 individuals, such as state politics, economic interests, histories of exclusion and the invisibility of poor people of color with significant medical and educational needs.

– Susan L. Gabel, Chicago

Copyright © 2010, Chicago Tribune

Recognizing Abilities, Not Disabilities

Friday, October 15, 2010, 7:35am EDT

It is a unique place where people with disabilities can show their abilities. A grand opening is being held today for the Museum of disABILITY History and the Training Center for Human Service Excellence.

Organizers say with People, Inc. say the Museum of disABILITY History is the only free standing museum dedicated to the history of people with disabilities. It features exhibits on the Kennedy family and their advocacy for disability rights along with people with disabilities in movies and TV. A sports section highlights Buffalo Sled Hockey. The museum also recognizes state and national advancements.

The goal of the museum is to expand community awareness by collecting, preserving and displaying artefacts pertaining to the history of people with disabilities. It is located at 3826 Main Street near Eggert Road on the Amherst/Buffalo border and is open to the public.

Public figures will be on hand to mark the occasion with a ribbon cutting this afternoon. The third week in October is known as Disability History Week in New York State. Today marks recognition of the state’s first ever Disability History Day.

Will the museum be a success in reaching out to the community and changing their perceptions of people with disabilities? Stay tuned. But it is one positive way to put Buffalo on the map for a very good cause. The museum’s slogan is "Unique to WNY… Unique to the World!"

Business First

Killing of Unborn Children with Downs – Genocide

It is the opinion of this Society that the government is guilty of genocide, a crime against humanity which is a violation of the United Nations Convention on the Prevention and Punishment of the Crime of Genocide. New Zealand is a signatory to the Convention that was passed by the General Assembly on 9 December 1948.

Relevant section of the Convention on the Prevention and Punishment of the Crime of Genocide

Article II: In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:

• Killing members of the group;
• Causing serious bodily or mental harm to members of the group;
• Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part;
• Imposing measures intended to prevent births within the group;
• Forcibly transferring children of the group to another group.

Our complaint is that in February 2010 the government of New Zealand instituted the “Antenatal Screening for Down Syndrome and other conditions – Quality Improvements” programme. This programme was introduced by the Ministry of Health following advice from the Ministry’s National Screening Unit [NSU] without public consultation. Cabinet papers obtained under the Official Information Act state that the outcomes of the programme will be a reduction in the number of births of people with Down syndrome, with around 90% of unborn children diagnosed with the condition being aborted.  The programme is funded by the state and targets all pregnant women in New Zealand in their first trimester on the basis of providing information to women to make decisions about their pregnancies, including abortion.  People with disabilities are the only group of people in New Zealand targeted for selective abortion. Down syndrome, and other conditions that are targeted, are genetic conditions that have no cure. The basis of first trimester screening is to enable woman to have an abortion within the 20 week timeframe if an abnormality is detected. Other reasons for prenatal diagnosis, such as parent education, hospital selection and delivery management, do not require testing during the first trimester and can be safely left until the later stages of pregnancy.  The preventing of birth of a group of people falls within the definition of genocide under international law.

This Programme was introduced by the Ministry of Health following advice from the Ministry’s National Screening Unit [NSU]. Documentation obtained under the Official Information Act from the Ministry of Health included the document Summary of Key Informant Interviews Antenatal Down Syndrome Screening Final Report which states that, “The programme will be cost beneficial for the population and the health system. The scan highlighted literature that supported the premise that the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome.”

This is eugenics which proclaims that only the perfect have a right to be born. The screening programme is a search and destroy mission and is a further major step on the slippery slope. The government seeks to conceal the true purpose of the programme by calling it a “quality improvement” rather than national screening programme. The government states that it is providing a service to families by giving them a choice whether to terminate the life of the child with Down syndrome or to allow the child to be born. We should be aware that this is part of a strategy of social conditioning. Right to Life contends that the government has decided that children with Down syndrome are not valued or wanted in our community. Its intention then is to encourage families to abort children with Down syndrome. The insidious option to terminate the life of the child will ultimately become a duty to kill the child before birth. With the acceptance of eugenics ultimately it may be expected that with the rationing of diminishing health resources the health care for the disabled will be restricted.

It is the opinion of this Society that the screening programme is in violation of Article II [d] of the Convention, Imposing measures intended to prevent births within the group. People with Down syndrome fall within the definition of “disabled persons” and are recognized under the UN Declaration on the Rights of Disabled Persons as a group which forms part of a nation. Under that Declaration disabled persons “have the same civil and political rights as other human beings” and must be protected, against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature.” These rights are further reinforced under Article 10 of the Convention on the Rights of Disabled, which states “State Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

We request that the government cease this screening programme. In the event that the screening programme is not terminated Right to Life New Zealand will lay a formal complaint with the United Nations [The Office of the Special Adviser on the Prevention of Genocide] against the government of New Zealand for genocide by imposing measures to prevent births of children with Down syndrome. The World Health Organisation [WHO], states that the classification for Down syndrome is a “mild to moderate disability.” Most children with Down syndrome participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. Today people with Down syndrome live at home with their families and are active participants in the educational, social and recreational activities of their community. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. Women who have an unborn child diagnosed with Down syndrome or any other disability need and deserve the support and compassion of the community to accept their child as a valued and loved member of the family and community.

The government should promote a culture of life by ensuring that families who have unborn children with Down syndrome receive compassion and are given all the encouragement and support needed to bring their child to birth. After the birth of their child they should be provided with the services necessary to assist them in providing for the special needs of their child.

Scoop Politics Independent News

Remarks by the President on 20th Anniversary of the Americans with Disabilities Act

6:26 P.M. EDT

THE PRESIDENT:  Thank you.  Good evening, everybody.  (Applause.)  Thank you so much.  Well, we have a gorgeous day to celebrate an extraordinary event in the life of this nation.  Welcome, all of you, to our White House.  And thank you, Robert, for the wonderful introduction.  It is a pleasure and honor to be with all of you on the 20th anniversary of one of the most comprehensive civil rights bills in the history of this country — the Americans with Disabilities Act.  (Applause.)

I see so many champions of this law here today.  I wish I had time to acknowledge each and every one of you.  I want to thank all of you.  But I also want to thank our Cabinet Secretaries and the members of my administration here today who are working to advance the goals of the ADA so that it is not just the letter of the law, but the spirit of the law, that’s being applied all across this country.  (Applause.)

I want to thank the members of Congress in attendance who fought to make ADA possible and to keep improving it throughout the years.  (Applause.)  I want to acknowledge Dick Thornburgh, who worked hard to make this happen as Attorney General under President George H.W. Bush.  (Applause.)

And by the way, I had a chance to speak to President Bush before I came out here, and he sends heartfelt regards to all of you.  And it’s — he’s extraordinarily proud of the law that was passed.  He was very humble about his own role, but I think it’s worth acknowledging the great work that he did.  (Applause.)

We also remember those we’ve lost who helped make this law possible — like our old friend, Ted Kennedy.  (Applause.)  And I see Patrick here.  And Justin Dart, Jr., a man folks call the father of the ADA — whose wife Yoshiko, is here.  (Applause.)  Yoshiko, so nice to see you.  (Applause.)

I also notice that Elizabeth Dole is here, and I had a chance to speak to Bob Dole, as well, and thank him for the extraordinary role that he played in advancing this legislation.  (Applause.)

Let me also say that Congressman Jim Langevin wanted to be here today, but he’s currently presiding over the House chamber — the first time in our history somebody using a wheelchair has done so.  (Applause.)

Today, as we commemorate what the ADA accomplished, we celebrate who the ADA was all about.  It was about the young girl in Washington State who just wanted to see a movie at her hometown theater, but was turned away because she had cerebral palsy; or the young man in Indiana who showed up at a worksite, able to do the work, excited for the opportunity, but was turned away and called a cripple because of a minor disability he had already trained himself to work with; or the student in California who was eager and able to attend the college of his dreams, and refused to let the iron grip of polio keep him from the classroom — each of whom became integral to this cause.

And it was about all of you.  You understand these stories because you or someone you loved lived them.  And that sparked a movement.  It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were.  It grew when you realized you weren’t alone.  It became a massive wave of bottom-up change that swept across the country as you refused to accept the world as it was.  And when you were told, no, don’t try, you can’the — you responded with that age-old American creed:  Yes, we can.  (Applause.)

AUDIENCE MEMBER:  (Inaudible.)

THE PRESIDENT:  Yes, we can!

Sit-ins in San Francisco.  Demonstrations in Denver.  Protests in Washington, D.C., at Gallaudet, and before Congress.  People marched, and organized, and testified.  And laws changed, and minds changed, and progress was won.  (Applause.)

Now, that’s not to say it was easy.  You didn’t always have folks in Washington to fight on your behalf.  And when you did, they weren’t as powerful, as well-connected, as well-funded as the lobbyists who lined up to kill any attempt at change.  And at first, you might have thought, what does anyone in Washington know or care about my battle?  But what you knew from your own experience is that disability touches us all.  If one in six Americans has a disability, then odds are the rest of us love somebody with a disability.

I was telling a story to a group that was in the Oval Office before I came out here about Michelle’s father who had MS.  By the time I met him, he had to use two canes just to walk.  He was stricken with MS when he was 30 years old, but he never missed a day of work; had to wake up an hour early to get dressed –

AUDIENCE MEMBER:  So what.

THE PRESIDENT:  — to get to the job, but that was his attitude — so what.  He could do it.  Didn’t miss a dance recital.  Did not miss a ball game of his son.  Everybody has got a story like that somewhere in their family.

And that’s how you rallied an unlikely assortment of leaders in Congress and in the White House to the cause.  Congressmen like Steny Hoyer, who knew his wife Judy’s battle with epilepsy; and Tony Coehlo, who waged his own; and Jim Sensenbrenner, whose wife, Cheryl, is a tremendous leader and advocate for the community.  And they’re both here today.  (Applause.)

Senators like Tom Harkin, who’s here today, and who signed — (applause) — who signed part of a speech on the ADA so his deaf brother, Frank, would understand.  And Ted Kennedy, whose sister had a severe intellectual disability and whose son lost a leg to cancer.  And Bob Dole, who was wounded serving heroically in World War II.  Senior officials in the White House, and even the President himself.

They understood this injustice from the depths of their own experience.  They also understood that by allowing this injustice to stand, we were depriving of our nation — we were depriving our nation and our economy of the full talents and contributions of tens of millions of Americans with disabilities.

That is how the ADA came to be, when, to his enduring credit, President George H.W. Bush signed it into law, on this lawn, on this day, 20 years ago.  That’s how you changed America.  (Applause.)

Equal access — to the classroom, the workplace, and the transportation required to get there.  Equal opportunity — to live full and independent lives the way we choose.  Not dependence — but independence.  That’s what the ADA was all about.  (Applause.)

But while it was a historic milestone in the journey to equality, it wasn’t the end.  There was, and is, more to do.  And that’s why today I’m announcing one of the most important updates to the ADA since its original enactment in 1991.

Today, the Department of Justice is publishing two new rules protecting disability-based discrimination — or prohibiting disability-based discrimination by more than 80,000 state and local government entities, and 7 million private businesses.  (Applause.)  And beginning 18 months from now, all new buildings must be constructed in a way that’s compliant with the new 2010 standards for the design of doors and windows and elevators and bathrooms — (applause) — buildings like stores and restaurants and schools and stadiums and hospitals and hotels and theaters.  (Applause.)

My predecessor’s administration proposed these rules six years ago.  And in those six years, they’ve been improved upon with more than 4,000 comments from the public.  We’ve heard from all sides.  And that’s allowed us to do this in a way that makes sense economically and allows appropriate flexibility while ensuring Americans with disabilities full participation in our society.

And for the very first time, these rules will cover recreational facilities like amusement parks and marinas and gyms and golf facilities and swimming pools — (applause) — and municipal facilities like courtrooms and prisons.  (Applause.)  From now on, businesses must follow practices that allow individuals with disabilities an equal chance to purchase tickets for accessible seating at sporting events and concerts.  (Applause.)

And our work goes on.  Even as we speak, Attorney General Eric Holder is preparing new rules to ensure accessibility of websites.  (Applause.)

AUDIENCE:  Yes, we can.

THE PRESIDENT:  Yes, we can.

We’re also placing a new focus on hiring Americans with disabilities across the federal government.  (Applause.)  Today, only 5 percent of the federal workforce is made up of Americans with disabilities — far below the proportion of Americans with disabilities in the general population.  In a few moments, I’ll sign an executive order that will establish the federal government as a model employer of individuals with disabilities.  (Applause.)  So we’re going to boost recruitment, we’re going to boost training, we’re going to boost retention.  We’ll better train hiring managers.  Each agency will have a senior official who’s accountable for achieving the goals we’ve set.  And I expect regular reports.  And we’re going to post our progress online so that you can hold us accountable, too.  (Applause.)

And these new steps build on the progress my administration has already made.

To see it that no one who signs up to fight for our country is ever excluded from its promise, we’ve made major investments in improving the care and treatment for our wounded warriors.  (Applause.)  To ensure full access to participation in our democracy and our economy, we’re working to make all government websites accessible to persons with disabilities.  (Applause.)

We’re expanding broadband Internet access to Americans who are deaf and hard of hearing.  We’ve followed through with a promise I made to create three new disability offices at the State Department and Department of Transportation and at FEMA.

And to promote equal rights across the globe, the United States of America joined 140 other nations in signing the U.N.  Convention on the Rights of Persons with Disabilities — the first new human rights convention of the 21st century.  (Applause.)

America was the first nation on Earth to comprehensively declare equality for its citizens with disabilities.  We should join the rest of the world to declare it again — and when I submit our ratification package to Congress, I expect passage to be swift.  (Applause.)

And to advance the right to live independently, I launched the Year of Community Living, on the 10th anniversary of the Olmstead decision — a decision that declared the involuntary institutional isolation of people with disabilities unlawful discrimination under the ADA.  (Applause.)

So HHS Secretary Kathleen Sebelius and HUD Secretary Shaun Donovan have worked together to improve access to affordable housing and community supports and independent living arrangements for people with disabilities.  And we continued a program that successfully helps people with disabilities transition to the community of their choice.  (Applause.)  And I’m proud of the work that the Department of Justice is doing to enforce Olmstead across the country.

And we’ve finally broken down one discriminatory barrier that the ADA left in place.  Because for too long, our health care system denied coverage to tens of millions of Americans with preexisting conditions — including Americans with disabilities.  It was time to change that.  And we did.  Yes, we did.  (Applause.)

So the Affordable Care Act I signed into law four months ago will give every American more control over their health care -– and it will do more to give Americans with disabilities control over their own lives than any legislation since the ADA.  I know many of you know the frustration of fighting with an insurance company.  That’s why this law finally shifts the balance of power from them to you and to other consumers.  (Applause.)

No more denying coverage to children based on a preexisting condition or disability.  No more lifetime limits on coverage.  No more dropping your coverage when you get sick and need it the most because your insurance company found an unintentional error in your paperwork.  (Applause.)  And because Americans with disabilities are living longer and more independently, this law will establish better long-term care choices for Americans with disabilities as a consequence of the CLASS Act, an idea Ted Kennedy championed for years.  (Applause.)

Equal access.  Equal opportunity.  The freedom to make our lives what we will.  These aren’t principles that belong to any one group or any one political party.  They are common principles.  They are American principles.  No matter who we are — young, old, rich, poor, black, white, Latino, Asian, Native American, gay, straight, disabled or not — these are the principles we cherish as citizens of the United States of America.  (Applause.)

They were guaranteed to us in our founding documents.  One of the signers of those documents was a man named Stephen Hopkins.  He was a patriot, a scholar, a nine-time governor of Rhode Island.  It’s also said he had a form of palsy.  And on July 4, 1776, as he grasped his pen to sign his name to the Declaration of Independence, he said, “My hand trembles.  But my heart does not.”  My hand trembles.  But my heart does not.

Life, liberty,  the pursuit of happiness.  Words that began our never-ending journey to form a more perfect union.  To look out for one another.  To advance opportunity and prosperity for all of our people.  To constantly expand the meaning of life, liberty, the pursuit of happiness.  To move America forward.  That’s what we did with the ADA.  That is what we do today.  And that’s what we’re going to do tomorrow — together.

So, thank you.  God bless you.  And God bless the United States of America.  Let me sign this order.  (Applause.)
END                          6:44 P.M. EDT

Closure call for institutions for disabled

Fri, Jul 16, 2010

Madam, – The report by Carl O’Brien (Front page, July 12th) suggested that the main conclusion of an unpublished report by the working group established by the Health Service Executive (HSE) was calling for the closure of all institutions for people with intellectual disabilities within the next seven years because they are in breach of residents’ basic rights.  While I agree with general tenor of this article I think it is necessary to look behind the rhetoric – moving people from one setting to another is not what’s required – what is required is a complete configuration of how disability services are planned and provided.

It is wonderful your paper is in a position to give its readership the heads-up on the Review of the Congregated Settings when a Dáil question addressed to Minister of State John Moloney on June 16th was unable ascertain whether the Minister for Health had completed the review; or indeed to garner details of the report due to industrial action in the HSE. Maybe the Ministers might now wish to comment on the report as its details are now in the public domain?  The closure of institutions for people with disabilities is an assumed panacea for the complex issues facing people with disabilities in congregated settings. Just replacing such establishments with supported or independent placements in the community will not in or of  itself address the complex needs of this group in our society.  While I can accept the interpretation of the report’s contention that suggests that thousands of people in congregated settings are separated from the community and stripped of dignity, privacy and independence – people with disabilities living geographically within our society are also socially excluded and continue to be so, in a context where our Government is reluctant to ratify the Optional Protocol of the UN Convention on the Rights of Persons with Disabilities.

While the report suggests that the continued operation of these institutions is in breach of Ireland’s obligations under various United Nations conventions and that the continued operation of such establishments contradicts official Government policies, it is important to note what the official Government position now is.   In response to a parliamentary question, Minister of State John Moloney stated that no decision has been taken on the signing by Ireland of the Optional Protocol of the UN Convention on the Rights of Persons with Disabilities.  The new model of supported or assisted living in the community advocated by the report needs to reflect a way of meeting the complex health needs of people with disabilities. Additional funding will need to be made available to mainstream health and social services, as the complexity of healthcare needs of those with intellectual disabilities with will place much greater resource demands on already stretched mainstream health system,

We should learn from the UK where resettlement of people from congregated settings has been very much completed. Research shows people with intellectual disability have much greater health needs than the general population. Among other issues, people with intellectual disability experience a greater prevalence of gastrointestinal disorders, pneumonia, sensory impairments, epilepsy, dental disease and osteoporosis. The suggestion that revenue from the sale of existing institutions would help fund the move towards community-based care is clearly not a serious contention in the current property climate . The process of closing down institutions will not simply be a case of replacing one set of buildings for another and will undoubtedly need to see the development of well-researched and well-planned services which are responsive and needs-driven and not philosophy laden.

I’m not sure I would agree with a HSE official being charged with driving and implementing a seven-year programme to close down inappropriate settings, as the shocking reality is that the majority of services provided for people with disabilities have never been provided by the State. Approximately 80 per cent of all such services are provided in the private and voluntary sector – the State has historically reneged on its responsibility to this group of people. Are we to believe we can trust that State or an organ of the State to make amends and devise a much better system of service provision? Where the Government is going to find a “congregated settings fund” is a curious proposition, although a curbing of departmental entertainment, travel and subsistence budgets might be a good place to start looking for some spare cash to begin the process.

– Yours, etc,

PAUL HORAN,
Lecturer in Intellectual
Disability.
Nursing School of Nursing
Midwifery,
Trinity College,
Dublin 2.

© 2010 The Irish Times