Sterilisation first option for the disabled

by Vince Chadwick
Jan. 2, 2013, 2:30 a.m.

PARENTS of women with intellectual disabilities are going straight for sterilisation procedures rather than ”existing and viable options” to help control menstruation and contraception, a national Senate inquiry has heard.  Associate Professor Sonia Grover, a gynaecologist at the Royal Children’s Hospital, told the hearing she was horrified when she received ”straight-out” requests for hysterectomies. She said increasing access to respite care, helping women manage their periods, and ensuring contraception is in place are options ”so these young women, if they are able, can enjoy a close sexual relationship without risks of pregnancy if they are not able to have a pregnancy and care for a child”.  Under Australian law, parents wishing to sterilise a child or adult children who cannot give consent for non-therapeutic reasons must apply to the Family Court or, in some states, a guardianship board.

However, Dr Grover expressed frustration with the therapeutic test. ”The question really is: Is this a procedure you would do on a non-disabled person?” she said. ”We should not be doing a sterilising procedure if we would not be doing it in somebody who did not have a disability.” The inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia began in September as part of the government’s response to a series of calls from the United Nations for an end to non-therapeutic sterilisation without consent, regardless of disability.  The executive director of Women with Disabilities Australia, Carolyn Frohmader, said options such as family planning and menstrual management were not being explored because the sexuality of young women with disabilities was not widely accepted.

”Parents and other care-givers are not made aware of these or are discouraged from understanding their effectiveness,” Ms Frohmader told a recent hearing in Melbourne.  In one case from Queensland in 2010, an 11-year-old intellectually disabled girl (”Angela”) was sterilised after she began getting her period, which was heavy and irregular, at age nine. Contraceptive pills were ineffective, two gynaecologists reported she would benefit from the removal of her uterus, and a Family Court judge was satisfied less-invasive treatments had been exhausted.  ”I am not a doctor but I am the mother of a nine-year-old child and I found that case very problematic for a whole range of reasons,” Ms Frohmader said.

The inquiry has so far received just five submissions, including one from a parent explaining her wish to have her 27-year-old intellectually disabled daughter sterilised.  ”Her own life is not stable enough to support another life,” the parent wrote. ”Advocates who say she has the ‘right’ to have a child need to factor in her ability to be responsible for that child.”  The author said they had already raised three children, but at 54 did not want to raise their grandchild. ”Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will?”  The inquiry is receiving submissions until February 22 and is due to report on April 24.

http://www.naracoorteherald.com.au/story/1213079/sterilisation-first-option-for-the-disabled/?cs=7

Finally, a year free of polio

The dream of a polio-free nation has just crossed its biggest ever hurdle. India, which kicked off a mammoth drive in 1995 to make country polio free, will on Friday complete a full year without any polio incident being reported in the country.

The country reported its last case of polio on January 13 last year, from Kolkata in West Bengal. Polio endemic states such as Uttar Pradesh and Bihar too have recorded a constant drop in the polio cases from 2008 — with no case recorded in the two states in 2011.

“UN officials tell me that hopefully by early next year we shall be able to announce that India is finally free of polio,” wrote UNICEF brand ambassador Amitabh Bachhan last month. The milestone has been greeted with a round of applause. Bill Gates, co-chair of the Bill & Melinda Gates Foundation, congratulated Indian government for its efforts in protecting the children against this debilitating disease. But the celebration might have to be muted in view of the long road ahead for declaring India a fully polio free country.

“To be totally polio free, the WHO stipulates that there should be no case of paralytic poliomyelitis by wild polio virus in last three calendar years. So, if there are no polio cases by wild polio virus in 2012 and subsequent years we can call India has eradicated poliomyelitis in 2015,” explains Dr AK Dutta, head of the department of paediatrics at Kalawati SC Hospital, Delhi.

Polio is usually caused by wild polio virus — the virus that is circulating in the environment. And the polio vaccine is prepared by passing the same virus through various culture mediums. In some patients whose immunity is very poor, this vaccine virus passes through their gut and enters the environment. Once in open environment, it transforms into wild virus and infects other people. This is called vaccine derived paralytic poliomyelitis. And this poses a big challenge.

“Once wild polio virus is eradicated from the country, the major issue of concern is that of acute poliomyelitis. The cases are occurring even now and outnumbering wild poliomyelitis cases even in India. Once polio is eradicated there will be a need for injectable polio vaccine in the programme along with Diphtheria Pertussis and Tetanus (DPT) vaccine so that we can control vaccine associated and vaccine derived poliomyelitis,” says Dr Dutta.

Dr AP Dubey, head of the department of paediatrics, Maulana Azad Medical College (MAMC), Delhi, says, “The pulse polio programme has been very effective in minimising the polio cases. We have been able to curtail this menace only because of constant and excellent efforts of the government of India.”

Sounding a caution for young parents, Dr Vandana Kent, senior paediatrician at Rockland Hospital, says, “Once couples become parents, they should be aware about the vaccination schedules and they should get their children immunized on time against this deadly disease.”

Ankita Chakrabarty/ Zee Research Group
New Delhi DNA, Bombay : Jan 13, 2012

This work is licensed under a Creative Commons Attribution Non-commercial No Derivatives license.

Voice of Courage

From initial denial, a long fight against the condition, to her final triumph – Reshma Valliappan talks about life after being diagnosed as schizophrenic

The dark mascara and unusual piercings reflect her rebellious spirit. But five minutes into the conversation and one spots other shades of her personality. For 30-year-old Reshma Valliappan, life changed when she was clinically diagnosed as schizophrenic. Now recovered, she talks about her over 10-year-long battle with the dreaded condition.  Before our conversation, the screening of a film based on her life is in progress at Mazda Hall, Dastur Primary School on Saturday. Directed by Aparna Sanyal, A Drop of Sunshine traces the problems that schizophrenics face in India through Valliappan’s story. Conducted in association with Connecting, an NGO works for suicide prevention, the film speaks of the tag attached to mental illness.

Each frame is filled with details from her life starting with her initial denial. “I was 22. I couldn’t accept it. I really did not even know what Schizophrenia was!” she says, “I was told I am suffering from a mental illness. It took me a while before I made peace with the fact.”  At that time, Valliapan was pursuing a Bachelors in Philosophy from Fergusson College. After a range of treatments – right from drugs to therapy, she got a sense of what was happening with her. In a world that already seemed delusional, dealing with the society’s close-minded attitude was the biggest challenge for her and her family. “When I was on the antipsychotic medicines, I still heard voices but I was too low on energy to even respond to them,” she reveals. It was then that she decided to get off the drugs. “I am not against medication. It’s a personal choice. But, for me giving up the medication made me fight harder,” she says.

Between bouts of complete insanity and hallucinations to violent outbursts, she started seeking solace in art. “Art was my catharsis. Alternative therapies helped a lot. It gave me a new lease of life,” she says. She remembers her father looking at her paint one day. “My paintings soon became a way of communication between my parents and me.”  The real breakthrough came when she decided to leave home. “I was tired of being around. I wanted to be out in the world – dealing with real issues. And my family let me do that. I would drive to Mumbai, sleep in cars. I did odd jobs like bartending. I even rented a room, stayed at a friend’s place but eventually I would always return home.”

Valliapan’s resilient spirit never let her down. But she was not making any headway in dealing with her condition. “One day, a friend advised me to do something that I had never thought of. She said: ‘why don’t you talk to the voices and find out what they want?’” The thought itself was overwhelming for Valliapan. “I remembered how when I painted, the voices would guide me. I knew I was symptomatic but I had to do it. I gave names to them. With the help of my doctor, parents, and friends, I learnt to differentiate between them and everything else,” she says.  Today, Reshma is still hounded by the voices. Ask that is what gives her strength too. "The power of vulnerability is huge. They say your biggest strength and weakness is the same thing,” she says. Her artwork, with bold strokes and vibrant colours – represents her strength. She paints for a living now. This year, she and a group of friends have come together to start ‘Red Door’. “We are trying to make people aware about this condition by going to unusual places and talking to people. I know there are many out there who need help. I can’t wait for them to come to us, so that’s why we are going to them,” she says.

Indian Express

Gaming helps treat brain stroke victims

Spanish scientists have created a robotic machine that integrates with a gaming  system to rehabilitate people suffering from neuromuscular disability while making therapy fun

Fifteen million people throughout the world suffer from a stroke every year and 5 million are left with chronic disabilities. Researchers have designed a robotic gaming system for treating neuromuscular disability amongst these patients.  The patient will be able to enhance his or her arm mobility by means of a portable robotic device and a software platform with videogames for tele-rehabilitation, so that the doctor can carry out the online monitoring of these exercises through the quantitative results obtained from the games.

The ArmAssist project is currently testing in a hospital, to find out the degree of satisfaction of patients who have suffered a brain stroke. The project was initiated by FIK, a business initiative focused on research into the field of ageing and disability.

THE DEVICE AND VIDEOGAMES

ArmAssist consists of a mobile-based device that is connected to the user through a hand brace that records and measures the movements of the shoulder and the elbow. This mobile base is connected to a standard computer that links the movements carried out by the arm to comply with the demands of the videogames developed for the rehabilitation of the upper limbs. The exercises proposed for favouring the rehabilitation of the patient are of two kinds: evaluation and training.

The evaluation ones are short and which should be undertaken every day at the beginning and the end of the training session. These videogames train independently the range of motion, force, distance and of precision, so that the therapist can evaluate the progress of the patient.  For their part, the training games last longer. The objective is precisely to motivate the patient, training the arm over a longer period. These games also integrate a cognitive component in order to train also this aspect. Amongst these videogames, there are puzzles, memory games and card solitaire games.

REMOTE THERAPISTS

Using tele-rehabilitation software that this assistive arm includes, a link is also developed between the patient and the therapist, which enables training him or her in their homes, and more independently.  While the doctor can ensure the patient is doing the exercises correctly by using the computer programme with an Internet connection.

Mumbai Mirror Bureau mirrorfeedback@indiatimes.com

A long journey for blast survivor

When 25-year-old Chirag Chauhan looks back over the last five years that changed his life, many emotions come to his mind. “It seems like a long journey,” he told The Hindu on the phone. Mr Chauhan was among the survivors of the serial train blasts on July 11, 2006 which claimed over 180 lives. That day he had left for home early when a bomb exploded in the suburban local at Khar Road station. His spinal cord was damaged due to the explosion and some particles are still embedded in his chest and close to the trachea.

Mr Chauhan, who dreamt of becoming a chartered accountant (CA), was doing his articleship then. He has made an amazing recovery. Wheelchair-bound now, he is a full-fledged CA working as a senior manager in the internal audit division of a private bank for one and a half years. He even drives the 20 minutes to his office in a specially designed car with a dual system which can be operated with his hands. He has little time for hobbies but could not resist driving to Lonavla, a hill station outside Mumbai, recently. “I wanted to see how far I could drive and it was a test for me,” he said. It was a fun trip with his friends.  Immediately after the terror strike, Mr Chauhan, like many others, spent long months in hospital; but he maintains he was optimistic from the start. In an emailed statement to all those who have kept in touch with him and followed his case, he quotes Winston Churchill, “Success is not final, failure is not fatal, it is the courage to continue that counts.” 

Despite his debilitating injures, he pressed on with his course and completed it on July 12, 2008. “To continue where others thought “It is impossible” — that’s one thing I dared to do,” he says. He lost his father when he was 18 and was faced with the prospect of looking after his sisters and mother, something he can proudly do now.  Mr Chauhan considered himself an average student and it was only in the tenth standard final examination that he managed a first class. His determination to do his CA led him to do his articleship and things were going well. “July 11, 2006, was a day like any other day for the rest of the world. I went to work in the morning and caught an early train back home as my work was over. I never thought in my wildest dreams that it would be my last train journey,” he says. 

It was for the first time that he and his family heard of “spinal cord injury.” “I am now termed as a paraplegic in medical terms,” he adds. The biggest problem initially that he had to deal with was the loss of freedom and the inability to carry out personal chores. Next came the total dependence on other people.  However, Mr Chauhan is grateful to his doctor Dr. Rajul Vasa who helped him become independent in doing routine tasks and made him practise using a wheelchair for three to four hours at a stretch. He had to undergo rigorous rehabilitation training and make extraordinary efforts. It soon struck him that being a paraplegic was irreversible. Many times he was plagued with the question, why me? “I had tons of questions but no answers.”

“I have been very optimistic from the beginning after my injury,” he remarks. To deal with his situation, he learnt to “live in the present” and soon realised that paraplegics have a normal life span. However, even after passing his CA, getting a job was tough. “One company after another rejected me only because I was paraplegic. Most of the companies overlooked all my education qualifications and concentrated on my only defect,” he says.Despite all this, Mr Chauhan bears no rancour towards anyone and does not blame the government. However, he is disappointed that the facilities for disabled people are very poor in this country and there is a huge lack of awareness about their problems and needs. He acutely realised the problems faced by the disabled only after what happened to him. People and governments should work against terrorism, he feels. There seems to be no looking back for this cheerful youngster who has fought a terrible injury and has come back to take life head on.

The Hindu

All hosps in state to test babies for disabilities?

Mumbai: Every baby born in a hospital across the state will be tested for disabilities if the state government and the Bombay high court have their way. Maharashtra advocate general Ravi Kadam informed a division bench of Chief Justice Mohit Shah and Justice S J Vazifdar on Friday that the state would issue instructions to all hospitals about screening new-born babies. Every hospital-—public as well as private-—will have to conduct the tests on the baby. Data about the test
results would be maintained by the government to indicate the incidence of disabilities. The instructions would be issued in the form of a circular by April 13, said the high court.   The assurance came during a special hearing of a bunch of petitions relating to the issues faced by people with disabilities.—including reservation in government jobs, allocation of Mhada houses and guidelines for writers for disabled students during examinations.

“Screening tests would help identify visual, auditory and motor disabilities in new-born babies and would aid early medical intervention,” said Dr Bhushan Punani of the Blind People’s Association. Move to enable new-borns welcomed

Mumbai: The Maharashtra government’s proposal to screen all new-borns at hospitals came in the Bombay high court during a hearing of a petition on issues faced by the disabled—including reservation in government jobs, allocation of Mhada houses and guidelines for writers for disabled students during examinations.

Activists welcomed the broad sweep of the rule that seeks to include every big and small hospital across the state. “If the rules are implemented effectively, the major beneficiaries would be babies born in rural hospitals, who otherwise would have had no access to such tests,” said advocate Kanchan Pamnani.

The court has also focused its attention on the reported absence of medical problems of the disabled in the MBBS syllabus. “When a parent takes a disabled child to the doctor, except for ordering a slew of tests there is no proper diagnosis of what ails the kid,” said an activist. Advocate Uday Warunjikar, counsel for one of the petitioners, said that teaching and sensitizing would-be doctors would not only help children with disabilities but also make the medical practitioners careful while issuing disability certificates. The high court has asked that notices be issued to the Medical Council of India so that it can respond to the issue.

Dr Y Amdekar, dean of Wadia Children’s Hospital, said that a clinical screening of children is conducted at birth. “At birth, doctors may be able to say that an organ is in place but how well it works may be known only after a few weeks. Hence, a new-born screening that includes a blood test is useful. A free blood test to screen for serious disorders that could result in mental retardation is being offered in Goa.’’ Dr Amdekar, added that matters of cost and accessibility need to be looked into.

Meanwhile, the high court has asked the state and the committee appointed by it to identify gadgets, devices and software to be provided to its visually challenged employees. The judges have also directed the state to submit a list of the number of posts that could be made available for the disabled under the 3% reservation policy if it was required to have been calculated from February 1996. This was the date when the Persons with Disabilities Act came into force. In a related development, the high court has told the state to issue uniform guidelines for writers who are used by visually challenged students during examinations.

Shibu Thomas TNN With inputs from Malathy Iyer)

Tests for disabilities in new-borns must : Bombay High Court

 

HC ORDER State asked to make screening tests mandatory in hospitals across Maharashtra and maintain data related to tests

Hospitals across Maharashtra will have to carry out compulsory screening tests to check disabilities in new-born babies.  The Bombay high court on Friday directed the state government to make it mandatory to conduct tests on babies to check for disabilities and also maintain data of such tests.  A division bench of chief justice Mohit Shah and justice SJ Vazifdar was hearing a clutch of petitions filed by NGOs seeking implementation of the Persons with Disabilities (Equal Opportunity and Protection of Rights and Full Participation Act), 1995, which reserves 3% jobs in government departments for the differently-abled.

Advocate general Ravi Kadam assured the Bombay high court that the state will direct all state government-run hospitals, municipal corporations/councils and zilla parishads, as well as private hospitals to conduct tests and collate data on a quarterly basis. The court has asked the government to issue a notification to this effect by April 30.  The high court has asked the court-appointed committee to identify gadgets/devices/software required for visually impaired employees, within two weeks. Once this process is complete, government officers, including principal secretaries of the social welfare department and finance department, and representatives of blind associations, have been asked to sort out pricing issues.

“Within two months, it should be possible for the state [government] to find requirements of visually impaired and software required by them so as to enable them [government] to finalise budget to procure it [software],“ the high court said. Advocates Uday Warunjikar and Kanchan Pamnani said the government has still not cleared the backlog in appointing visually impaired as required under the Act and no recruitment of the visually impaired had happened in the past three years.  The HC has directed the state to submit the number of vacant posts, which would be available for the differently-abled under the reservation policy after 1996, when the Act came into force.

Postcard from Japan: Disability and Disaster

Suzanne Kamata was born and raised in Grand Haven, Michigan, and now lives in Tokushima Prefecture, Japan with her husband and two children. She is fiction editor for the popular e-zine Literary Mama, and edits and publishes the literary magazine Yomimono. Her work has been nominated for the Pushcart Prize five times, and received a special mention in 2006. She is also a two-time winner of the All Nippon Airways/​Wingspan Fiction Contest. She is the editor of Love You to Pieces: Creative Writers on Raising a Child with Special Needs.

Whenever I case a new location, look at friends’ vacation photos, or watch travelogues, I wonder about wheelchair accessibility. I wondered the same thing on Friday afternoon, watching disaster coverage on TV with my eleven-year-old daughter in Japan.

An hour earlier, when I went to pick her and her wheelchair up from school – the school for the deaf, which is housed in an aging four-story building with no elevator – her principal rushed out to my car to tell me to hurry home. He told me that a tsunami warning had been issued for Tokushima Prefecture. Although we live around 500 miles from Miyagi Prefecture, the scene of the greatest devastation, the deaf school is right next to an tributary of the Yoshino River, not far from the inland sea, and our home is just on the other side of the levee. It seemed like a good idea to get away from water.

As I listened to the sirens coming from across the road, warning people to leave the riverside, my daughter and I watched footage of people scrambling up hills as their houses, cars, and livelihoods were washed away. I couldn’t help thinking about how hard it would be to get a wheelchair up that hill – and later, seeing photos of the aftermath, of how hard it would be to push through that debris.

It’s not especially easy to get around with a wheelchair at the best of times. There are many restaurants near our house that we can no longer visit as a family because they are accessible only by steps. At the local McDonald’s, the Happy Meal display blocks the wheelchair ramp, and the toilet stall is too narrow for my daughter and her wheelchair. Last summer, she and I went by train to a small town an hour west of here for the funeral of one of her teachers. In order to board a "barrier-free" train car in Tokushima City (pop. 264,764), I had to carry her wheelchair up steps to the platform. There was no ramp. And of course there were no wheelchair ramps in the little towns we travelled through, nor at our final destination. I found out later that I could have called for assistance in advance, but it seemed like a lot of trouble. Why not just pour a little concrete?

After living in Japan for 23 years, I’ve come to understand that along with the capacity for endurance, much vaunted by the foreign press these past several days, and a sense of fatalism encompassed by the oft-repeated phrase "shikata ga nai" (it can’t be helped), the Japanese can be characterized by an aversion to meiwaku (being a burden) In other words, no one wants to make trouble. This, I believe, more than a sense of shame, is why people with disabilities are sometimes reluctant to venture out, and why people don’t like to complain.

Last week, I discussed these issues with a nurse that I’ve been teaching privately for the past couple of years who is writing a dissertation on accessibility. This week, we talked about the earthquake. She told me that she had grown up in Miyagi, where over a thousand bodies were found in the sea, and that her grandmother’s house in Fukushima has been irreparably damaged. She told me that as a nurse, training in Chiba, one of the shakier cities in Japan, she learned to wrap patients in a sling made of sheets for easy transport. (It takes too much time to get patients to wheelchairs and gurneys.) She said that she could do this in three minutes flat.

Japan is arguably the most disaster-ready nation on earth. Earthquake drills are held regularly at my children’s schools. Outside my daughter’s classroom – and every other classroom – there is a backpack with emergency supplies. My kids – and every other kid in Japan – have padded, fireproof hoods near their desks. This past week, my daughter has been practicing for earthquakes every day. Her teacher tells me that although at first she dawdled, she is getting faster at crawling under her desk. But her classroom is on the first floor of an old building that still bears cracks from the Great Hanshin Earthquake in 1995.

I am relieved when I see people in wheelchairs among the evacuees on TV. They made it out alive, in spite of their disabilities. Meanwhile, I am reminded of that great law of nature – sometimes only the fittest survive. One woman who escaped the flood confessed that she couldn’t save her elderly parents. In order to live, she had to let them go.

Photo by rachelcreative on Flickr. Used under creative commons.

BEACON BROADSIDE Ideas, opinions, and personal essays from respected writers, thinkers, and activists. A project of Beacon Press, an independent publisher of progressive ideas since 1854.

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

Justice Dept. Pushes For Services To Move Patients Out Of Mental Hospitals

A sweeping agreement this week between the Justice Department and the state of Georgia highlights an aggressive new campaign by the Obama administration to ensure that people with mental illness and developmental disabilities can get services in their communities and not be forced to live in institutions.  The settlement, announced Tuesday, will be used "as a template for our enforcement efforts across the country,’" said Thomas Perez, assistant attorney general for the Civil Rights Division at Justice, in a statement announcing the accord.

The agreement ends three years of legal wrangling over Georgia’s mental health system. National consumer advocacy organizations called the Georgia settlement unprecedented, with Curt Decker, executive director of the National Disability Rights Network saying in an interview that the agreement "sends a message to the rest of the country."  The Justice Department action demonstrates broader enforcement of the landmark 1999Olmstead decision by the Supreme Court. The court in Olmstead – also a Georgia case — ruled that under the Americans With Disabilities Act, unnecessary institutionalization of people with disabilities is a form of discrimination.

The action follows decisions by Justice to file briefs and join Olmstead-related lawsuits in several states, including New York, North Carolina, Arkansas, California and Illinois. "We will continue to aggressively enforce the law, and we hope other states will follow Georgia’s example," Perez said.  As part of the accord, Georgia agreed to specific targets for creating housing aid and community treatment for people with disabilities, who in the past have often cycled in and out of the state’s long-troubled psychiatric hospitals. The state said it will set aside $15 million in the current fiscal year and $62 million next year to make the improvements.

The state agreed to:

• End all admissions of people with developmental disabilities to the state hospitals by July 2011.
• Move people with developmental disabilities out of hospitals to community settings by July 2015.
• Establish community services, including supported housing, for about 9,000 people with mental illness. These individuals, Perez said, "currently receive services in the state hospitals, are frequently readmitted to state hospitals, are frequently seen in emergency rooms, are chronically homeless or are being released from jails or prisons.’"
• Create community support teams and crisis intervention teams to help people with developmental disabilities and mental illness avoid hospitalization.
• Georgia Gov. Sonny Perdue said the agreement "moves us towards our common goals of recovery and independence for people with mental illness and developmental disabilities."

Lewis Bossing, a senior staff attorney at the Bazelon Centre for Mental Health Law, a Washington, D.C.-based advocacy organization for people with mental illness, said the "ground-breaking" settlement capped a flurry of federal legal activity in disability cases during the past 18 months. Bossing said the Justice Department, by spelling out an array of community services required to meet Olmstead criteria "will make it more likely that states will change the way they do business with people with disabilities."  Over the past year and a half, Department of Justice attorneys:

• Filed a brief in support of North Carolina litigation seeking to keep two individuals with developmental disabilities in community settings. A proposed cut-off of funds jeopardized the housing for the two. Perez said in an April statement about the case, "We will not allow people with disabilities to be a casualty of the difficult economy."
• Filed a motion to intervene in a lawsuit in New York seeking supported housing units for thousands of residents of "adult homes."
• Filed briefs in existing lawsuits in Florida, Illinois and New Jersey against what the agency called "unnecessary institutionalization" of people with disabilities.

The Justice Department began probing the Georgia mental hospitals in 2007 after a series in the Atlanta Journal-Constitution found dozens of patients died under suspicious circumstances in the state-run facilities. The newspaper also chronicled abuse by hospital workers; overuse of medications to sedate patients; and discharge of many patients to homeless shelters.  The state agreed to improve the hospitals in a January 2009 agreement with the Justice Department, in the final days of the Bush administration. But a coalition of consumer groups filed a brief in opposition to that settlement, saying it failed to improve hospital discharge planning and services in the community.

The Justice Department later backed away from the original terms of the deal and eventually added the Olmstead issues in a separate complaint in January. Last month, the federal judge in the case ratified the original hospital agreement, but let the Olmstead portion proceed, which culminated in the second agreement. The community services pact will have an independent monitor to assess its progress.  Change can’t happen soon enough for Rhonda Davidson. She was discharged from a Milledgeville, Ga., mental hospital when the state closed her unit earlier this year. While Davidson, who has schizophrenia, has found a group home in metro Atlanta to live in, she has not received the treatment program and employment help she needs, says her attorney, Sue Jamieson of the Atlanta Legal Aid Society. This agreement should help accelerate that help for Davidson and others, Jamieson said.

Kaiser Health News

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

Manmohan promises disabled-friendly laws

FIGHTING FOR THEIR RIGHTS: Physically challenged persons, under the banner of the National Platform for the Rights of the Disabled and led by CPI(M) leader Brinda Karat, march on Parliament Street in New Delhi on Tuesday to press their demands. Photo: V. Sudhersan

Prime Minister Manmohan Singh on Tuesday said the government was in favour of amending the laws, if need be, to make them more disabled-friendly. He gave this assurance to a delegation of the differently-abled persons who met him in Parliament. The delegation was led by CPI (M) MP Brinda Karat.  “The Prime Minister was extremely sympathetic towards the demands of the disabled persons and said their demands were genuine,” Ms. Karat said. Dr. Singh assured the delegation of changing the laws to make them disabled-friendly, if necessary. The Prime Minister interacted with the members of the delegations and enquired about their problems. Talking to The Hindu, Ms. Karat said this was the first time that a delegation of differently-abled persons had visited Parliament House. “It was pointed out to the Parliament staff that there was only one gate (Gate no 9) in Parliament House for the physically disabled people and this was far away from the main entrance,” Ms. Karat said. The delegation also met the Union Minister for Social Justice and Empowerment Mukul Wasnik who told them that the government was finalising a new law for the disabled that would replace the existing law.

Earlier, a large number of people with different forms of disabilities marched to Parliament House to demand a better deal. Marching under the banner, ‘National Platform for the Rights of Disabled Persons,’ the people highlighted the plight of the economically and socially disadvantaged among the disabled, the poor, and the Scheduled Castes and the Scheduled Tribes. “The basic issue is that of the approach of the government and we must request you to consider our demands not as an act of charity but as fulfilment of entitlements and rights as equal citizens of India. India is a signatory to the United Nations Convention on the Rights of the persons with Disabilities which enjoins the government to ensure minimum rights and livelihood to disabled citizens,” the marchers said in a memorandum submitted to the Prime Minister. The demands include a comprehensive social security system for all persons with disabilities and their families including the Antyodaya cards, free health care for disabled persons, amendments to the Right to Education Act to make provision for disabled teachers and professional and identification of jobs for the disabled immediately with annual special recruitment drives each year.

Besides setting up a separate Ministry for disability affairs, the memorandum also sought issuance of a universally valid identity card and replacing the current Persons with Disabilities Act (1995) in consonance with the provisions of the U.N. Convention and harmonising other laws, the disabled persons also wanted proper enumeration of the persons with disabilities. The organisations that participated in the march included the Paschimbanga Rajya Pratibandhi Samaiilani, the Differently Abled Persons Welfare Federation of Thiruvananthapuram, the Karnataka Rajya Angavikalara Mattu Palakara Okkota, the Jharkhand Vikalanga Morcha, the Tamil Nadu Association for the Rights of all types of Disabled and Caregivers and the Vibhinna Prathiba Vanthula Jakkula Vedika of Andhra Pradesh.

The Hindu

People With Disabilities Experience Their Possibilities at Abilities Expo Los Angeles

Abilities Expo is this weekend on April 9-11, 2010 at the Los Angeles Convention Center

LOS ANGELES, April 5 /PRNewswire/ — Thousands of people with disabilities, their families, caregivers, seniors, veterans and healthcare professionals are expected to attend Abilities Expo on Friday, April 9, through Sunday, April 11, 2010 at the Los Angeles Convention Center. Admission is free and show hours will be Friday 11 am to 5 pm, Saturday 10 am to 5 pm and Sunday, 11 am to 4 pm.

Abilities Expo has put together an impressive line-up of exhibits, celebrities, workshops, events and activities to appeal to the full spectrum of people with disabilities, from children to seniors and everyone in between. “Abilities Expo’s distinguished 31-year track record of enhancing the lives of people with disabilities through technology, education and networking will continue in Los Angeles,”
said David Korse, president and CEO of Abilities Expo. “Between the adaptive sports demonstrations, the interactive assistive technology pavilion, the dynamic workshops and the thousands of products and services on display … this is a must-attend for everyone in the Community.”

The Latest Products and Services

Attendees expecting cutting-edge products and services for people with all types of disabilities will not be disappointed. They will find mobility products, medical equipment, home accessories, essential services, low-cost daily living aids, products for people with visual impairments and much more. The new Assistive Technology Pavilion will feature 2,000 square feet of the latest AT products for people with wide ranges of physical, sensory and developmental disabilities. This pavilion is anchored by the Team of Advocates for Special Kids  (TASK), who is sponsoring an Interactive Demo Lab. This lab will not only feature an array of breakthrough assistive technologies, it will  allow Expo visitors to experience them hands-on.

Relevant Workshops

A series of compelling workshops which address pressing disability issues will be offered free-of-charge to all attendees. Sessions will focus on travel, dating, finances, home modifications, the criteria to getting the best accessible vehicle and that is just for starters. Special sessions will also be available for healthcare professionals.

Extreme 360 Wheelchair Back Flip, Rock Climbing, Adaptive Rowing and More!

Abilities Expo does not merely inform, it engages and it entertains. “Wheelz” Fotheringham will perform his jaw-clenching, Guinness-record  earning wheelchair back flip. Attendees who thought rock climbing was outside the realm of possibility will find themselves at the top of a fully-accessible adaptive rock climbing wall. The next Ms. Wheelchair California will be crowned on site. To round it out, there will be interactive adaptive sports, dance performances and instruction, adaptive rowing, canine assistance demos, kid-focused activities and an Artist Market showcasing the works of local artists with disabilities. There will even be free H1N1 vaccinations administered by the Los Angeles County Department of Public Health while supplies last.

Celebrity Encounters

Actor, writer and producer Richard “Jaws” Kiel will be signing autographs and photos for fans at the Expo. The 7’2″ Hollywood legend is best known as the relentless, steel-tooth assassin who pursues James Bond across multiple continents in The Spy Who Loved Me and as Adam Sandler‘s biggest fan in Happy Gilmore. Paralympian athlete Angela Madsen will also be on hand to demonstrate adaptive rowing and showcase her famous ocean rowing boat, RowofLife. It was this vessel that carried her into Guinness record fame as the first woman to row across the Indian Ocean.

Miracles Happen

Attendee Desiree Trujillo, the mother of five-year-old Alexzander, a child with congenital cerebral palsy, is especially excited about the upcoming event. “I can’t wait for the new Abilities Expo!” she said. “Zander has gotten very good with the walker he received at last year’s show and wants to show off.” When fitted with Prime Engineering’s KidWalk at the 2009 Southern California Abilities Expo, Alexzander walked hands-free for the first time. Witnessing the child’s profound transformation from a neighboring booth, Joe Hallock and Gregg Weinschrieder, co-owners of SleepSafe Beds, bought the life-changing equipment for him.

For more information, schedules and directions, visit www.abilitiesexpo.com/losangeles/4.html.

Website: www.abilitiesexpo.com

Equal insurance benefits for differently-abled

Ministry of Communication and Information Technology would take a decision shortly with regard to the extra premium paid by the disabled employees

New Delhi: The Central Government Wednesday informed the Delhi High Court that equal benefits for postal life insurance will be provided to the differently-abled government employees with a maximum limit of Rs 5,00,000.  Counsel for the Ministry of Communication and Information Technology informed the court that a decision has already been taken by the Department of Posts to give equal treatment to the differently-abled government employees.  A division bench of Chief Justice Ajit Prakash Shah and Justice Rajiv Sahai Endlaw was hearing a public interest litigation filed by visually impaired Vikas Gupta, a professor, seeking parity with the general employees in terms of benefits.

Gupta alleged discrimination by the government with the disabled employees in terms of conferred benefits. His counsel Pankaj Sinha said the disabled employees were asked to pay extra premium in terms of the policy.  He submitted that according to the insurance policy, employees can avail a maximum of Rs five lakh and minimum of Rs10,000 sum insured, whereas the differently-abled employees were getting merely Rs one lakh.  The government’s counsel said the department would take a decision shortly with regard to the extra premium paid by the disabled employees.  The court then fixed the case for further hearing January 20 and directed the government to file a detailed affidavit. 

Igovernment

Deciding who lives and who dies

QALY (Quality Adjusted Life Score) is the methodology used by the United Kingdom (UK) to determine whether or not an individual is eligible to receive treatment for an illness.  The formula reduces the decision making to a dollars and cents evaluation.  In short, if it costs too much, the patient is denied care.

Fortunately, we have not yet reached the point where our own health care is decided purely on the basis of cost.  Or have we?

As legislators and the public have debated health care reform, claims and counterclaims by each side that the other is trying to scare the public into supporting their position have only served to confuse the issue.  However, comments made by Robert Reich, former Labor Secretary in the Clinton administration, now an Obama economics advisor, are worth noting. While campaigning for the Democratic presidential nomination at the UC Berkeley campus in 2007, he said:

I’m so glad to see you, and I would like to be president. Let me tell you a few things on healthcare. Look, we are we have the only healthcare system in the world that is designed to avoid sick people. That’s true. And what I’m going to do is I am going to try to reorganize it to be more amenable to treating sick people, but that means you, particularly you young people, particularly you young healthy people, you are going to have to pay more.

And by the way, we are going to have to, if you are very old, we’re not going to give you all that technology and all those drugs for the last couple of years of your life to keep you maybe going for another couple of months. It’s too expensive. So we’re going to let you die.

Also I’m going to use the bargaining leverage of the federal government in terms of Medicare, Medicaid—we already have a lot of bargaining leverage—to force drug companies and insurance companies and medical suppliers to reduce their costs. What that means, less innovation and that means less new products and less new drugs on the market which means you are probably not going to live much longer than your parents. Thank you.

Secretary Reich’s honesty is refreshing.  However, since honesty and transparency are hardly hallmarks of the Obama administration and Congress, we are forced to read between the lines in an effort to determine their true intent for reforming America’s health care system. Is it now the prevailing attitude that the government intends to let old people die because caring for them is too costly? The Brits’ QALY system is used to make life and death decisions about which patients will receive care or medicines.  The decision-making process is reduced to a formula for rationing health care based on age and the estimated costs of providing medical treatment and/or services, including prescription drugs.  (see http://www.york.ac.uk/inst/che/pdf/mathprog.pdf).

David Lee, a GE health economist, explained QALY as “…Quality adjusted life year, a year of life adjusted for its quality or its value.  A year in perfect health is considered equal to 1.0 QALY.  The value of a year in ill health would be discounted.  For example, a year bedridden might have a value equal to 0.5 QALY…We try and evaluate benefits and costs.  The way we measure that is a QALY, quality adjusted life year…We try to figure out what the QALY for certain technologies are. Is the gain in QALYs to the gain in costs worth it? The UK has something like £30,000 per QALY.  If the technology can deliver at less than that they’ll pay for it, it it’s more than that they won’t…What it’s telling technology developers is that if you’ve got a high cost with low medical benefit product your chances of getting into market are lower.  If you’re a cancer patient that stands to benefit from an additional three months of life that will cost the NHS (National Health Service) $70k is it worth it or not?”

This places a monetary value on human life. Decisions are made based on life expectancy.  If a particular treatment isn’t determined to be worth the cost, care is denied.  The rationale is that, while these may be difficult decisions to make, they are necessary. The thinking is that there has to be some way to measure costs in order to keep them from getting completely out of control. On the surface, that may make sense, unless, of course, you’re the one who needs the treatment.

Once again, the admonition, “be careful what you wish for,” applies.

In a society that bases life and death decisions on cost, such as the QALY system in Great Britain, it’s easy to see how it’s possible to deny health care to people who have the potential for great accomplishments.

For example, Helen Keller, who was born blind and deaf, through the patience and perseverance of her nurse and companion, ultimately became a world renown figure for her accomplishments in helping the handicapped.  However, my guess is that if she were born at a time when the health care industry was making cost-based decisions about who should live or die, she would not have been spared.  She has been quoted as saying, “I dreamt of heaven the other night, and the pearly gates swung wide. An angel with halo bright, ushered me inside. And there to my astonishment, stood folks I’d judged and labeled as quite ‘unfit,’ of ‘little worth,’  and ‘spiritually disabled.’ Indignant words rose to my lips, but NEVER were set free, for EVERY face showed stunned surprise, not ONE expected Me!”

Another person who probably would not be with us today when the health care system restricts access on the basis of cost is one of world’s greatest physicists, Stephen Hawking (1942-).  Hawking has suffered for approximately 40 years with ALS (amyotrophic lateral sclerosis), more commonly known as Lou Gehrig’s Disease.  The list of his accomplishments is too long to detail here, but he has authored a number of important contributions to the fields of cosmology and quantum gravity, including “black holes.”  Hawking developed ALS in his youth, while attending Cambridge, and has become increasingly paralyzed over the years, to the point that today he is almost completely immobile and can no longer speak. He has been quoted as saying, “It is a waste of time to be angry about my disability. One has to get on with life and I haven’t done badly. People won’t have time for you if you are always angry or complaining.”

If the British QALY system for evaluating the worth of individuals had existed at the time Stephen Hawking first became paralyzed, would he have received the care and support that has kept him alive for the past 40 or 50 years, or would the cost of his care resulted in the conclusion that it was simply too expensive?

There is a long list of people who have made significant contributions to society and who might well have been denied health care on the basis of cost under the British QALY system or a similar policy that could potentially become the method for health care decision-making in America under the type of health care reform that the Obama administration has been pushing.  Following are just some examples:

• Christopher Reeve (1952-2004), actor: Was crippled as a result of a horse-riding injury and dedicated the remaining years of his life attempting to harness the power of medical research to enable people with spinal cord injuries to recover and walk again.
• Ray Charles (1930-2004), musician: Became blind at age seven, learned to play the piano and went on to be one of America’s greatest entertainers.
• Jose Feliciano (1950-), Stevie Wonder (1950-) and Ronnie Milsap (1945-), composers and musicians: Were all born blind and overcame their handicaps to become leading song writers and entertainers.
• Franklin Delano Roosevelt (1882-1945), U.S. President 1933-1945: suffered with Polio, which he contracted in 1921.
• Louis Braille (1809-1852), inventor of the Braille System of reading and writing.  Became blind at age 3 as a result of an accident.
• Anne McDonald (1961-), Australian author and activist for the rights of people with communication disability. She developed cerebral palsy as a result of a birth injury. Diagnosed as having severe intellectual disability at the age of three she was placed in an Australian government institution for people with severe disabilities and lived there without education or therapy for eleven years. Anne wrote her story in Annie’s Coming Out, a book she co-authored with Rosemary Crossley in 1980 (the film Annie’s Coming Out based on the book won several Australian Film Institute awards and was released in the U.S. under the title Test of Love).
• Hubert H. Humphrey (1911-1978), two-term Vice President of the U.S. and U.S. Senator, is credited with saying: “The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled.”

Important words everyone should keep in mind during the current debate about reforming America’s health care system.  If the changes lead to health care rationing and decision making about who lives and who dies based on monetary considerations, we will not have moved forward but backward in our quest for fairness and equity.

Comments and observations about disabilities that provide us with revealing insights:

• Death is no more than passing from one room into another. But there’s a difference for me, you know. Because in that other room I shall be able to see…No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit…”I also dislike people who try to talk down to my understanding. They are like people who when walking with you try to shorten their steps to suit yours; the hypocrisy in both cases is equally exasperating.” – Helen Keller (1880-1968), born blind and deaf.
• “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus–the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.” – Helen Keller
• “Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.” – Helen Keller
• “Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too.” – Lawrence Bixby, author of over 40 books.
• “We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don’t see a cripple. I haven’t met anyone yet who isn’t handicapped in some way. So what’s the big deal? Don’t hide your deformity. Wear it like a Purple Heart.” – Georgiann Baldino, author, co-founder of cancer support group.
• “I discovered early that the hardest thing to overcome is not a physical disability but the mental condition which it induces. The world, I found, has a way of taking a man pretty much at his own rating. If he permits his loss to make him embarrassed and apologetic, he will draw embarrassment from others. But if he gains his own respect, the respect of those around him comes easily.” – Alexander de Seversky (1894-1974), aviation pioneer.
• “But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?” – Lois McMaster Bujold (1949-), science fiction writer.
  “The healthy and strong individual is the one who asks for help when he needs it. Whether he’s got an abscess on his knee or in his soul.” – Rona Barrett (1936-), Hollywood columnist, author, TV
• “Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” – Neil Marcus (1954-), poet, playwright, disabled from age eight.
• “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.” – Susan Wendell, Ph.D., feminist author, suffers with chronic fatigue syndrome.
• “For me, the wheelchair symbolizes disability in a way a cane does not.” – Annette Funicello (1942-), actress, suffers with multiple sclerosis.
• “A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities.” – William Arthur Ward (1921-1994), author, poet, columnist.
• “It (hepatitis C) will kill four times as many Americans as AIDS will over the next decade. I feel that whatever kind of disability God has given me, as an entertainer and as a public figure, it is so I can be a representative for others.” – Naomi Judd (1946-), singer, entertainer, mother of actress Ashley Judd and singer Wynonna, suffered with hepatitis C.
• “Americans believe that people should work hard and get ahead on their own, but when disaster strikes and they need help with retirement or disability, Americans as a whole should come to their aid.” – Jacob Hacker, Ph.D. (1971-), professor of Political Science, UC Berkeley.
• “Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” – Martina Navratilova (1956-), world champion tennis player.
• “Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” – William J. Brennan, Jr. (1906-1997), Associate Justice of U.S. Supreme Court.
• “The only disability in life is a bad attitude.” – Scott Hamilton (1958-), American figure skater, four time Olympic champion.
• “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness – I want to turn my disability into ability.” – Susan Boyle (1961-), Scottish singer.
• “It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid.” – Susan Hampshire (1937-), English actress, TV star. “It was ability that mattered, not disability, which is a word I’m not crazy about using.” – Marlee Matlin (1965-), American actress, deaf (from 18 months of age)

© 2009 Harris R. Sherline, All Rights Reserved

Read more of Harris Sherline’s commentaries on his blog at “www.opinionfest.com”

The Examiner

Women with Disabilities and Health Care: What the Research Shows

A recent study by the National Council on Disability (NCD) titled “The Current State of Health Care for People with Disabilities” provided sobering statistics regarding all aspects of health and healthcare for women with disabilities.

Notes the report,

Recent research reveals that women with disabilities experience poorer health than women who do not have disabilities, despite the fact that both groups report the same types of health problems. Nearly a third of women with extensive functional limitations rate their overall health as poor compared with less than 1 percent of women with no limitations. [“Improving the Health and Wellness of Women with Disabilities: A Symposium to Establish a Research Agenda,” Center for Research on Women with Disabilities (CROWD), Baylor College of Medicine]

In addition,

As they age, women with disabilities tend to have poorer health than women who do not have disabilities. They are more likely to be overweight, smoke, have high blood pressure, and experience mental health problems. Women with more significant disabilities are more likely to live alone, be unemployed, have less education, be divorced, and live in poverty. [Susan L. Parish and M. Jennifer Ellison-Martin, “Health-Care Access of Women Medicaid Recipients: Evidence of Disability-based Disparities,” Journal of Disability Policy Studies 18, no. 2 (2007), pp. 109–116]

Women with Disabilities Can Control Some Health Outcomes

Two of the issues most critical to the health of women with disabilities, however, are “lifestyle” issues that with the right encouragement, motivation, and information, they may be able to address themselves: specifically, smoking and obesity. According to a 2008 study from the National Center for Health Statistics, “about 30 percent of women with basic actions difficulties were overweight, and 31 percent were obese. Among those with complex activity limitations, almost 30 percent reported being overweight, and over 34 percent were obese. Slightly over 23 percent of women with complex activity limitations smoke, compared with 22.5 percent of women with basic actions difficulties. [Altman and Bernstein, Disability and Health in the United States, 2008]

But Getting Decent Reproductive Health Care is Still a Problem

Reproductive care for women with disabilities seems to prove especially problematic. The NCD researchers found that although women with disabilities require the exact same health services related to sexuality, reproductive care, and childbearing as do women without disabilities, …..social misperceptions and stereotypes about disability can make it difficult for women with disabilities to obtain information, medical care, and services to ensure that their reproductive needs are met. Such needs include routine gynecological and breast examinations; screening for sexually transmitted diseases (STDs); contraception; consultations about sexuality and sexual function; fertility consultation and support; obstetrical care during pregnancy, labor, and delivery; and information about healthy parenting and about issues related to menopause, including osteoporosis, loss of libido, and insomnia.

The types of barriers encountered by women with disabilities in need of reproductive health care, according to the NCD report, included:… limited professional training and competency of primary care and reproductive care specialists; inadequate or no health insurance coverage for visits to specialists; poor physical access to usable and adapted or specialized examination and diagnostic equipment; and negative or discriminatory provider attitudes. Although the source of this statement, Sandra A. Welner’s “Gynecologic Care and Sexuality Issues for Women with Disabilities,” (Sexuality and Disability, v. 15, no. 1, 1997) is now more ten years old, anecdotal evidence among Disaboom’s members indicates that not much has changed since Ms. Welner undertook her research.

Decent HealthCare for Women with Disabilities: Where to Start

For starters, we’d send every legislator and local politician the link to the NCD’s outstanding and comprehensive report, “The Current State of Health Care for People with Disabilities”. Next, we’d send the same link and report information to the American Medical Association to inquire as to what steps their members are taking to help remedy these appalling statistics. (We just e-mailed them to ask about their progress on insisting on accessible doctors’ offices and diagnostic equipment.) Next, you may want to take a look at the health issues that are within your control: stop smoking, start a modest exercise program with the counsel of your medical professional, and learn what to eat and what not. True, these are just starting points to address a big and complex challenge, but starting somewhere is better than not starting at all.

Disaboom

Disabled by society

New thinking in the last century has radically changed political concepts that determine relations between the state and its citizens, and between society and its members. New rights are now being defined although the ground realities have yet to change.

Take the case of persons with disabilities. Until recently, providing them with care was perceived as charity. Today, they can legally claim respect for their dignity, inclusiveness in society, non-discrimination and equality of opportunity as a matter of right.  Disability is being redefined in a social rather than a physiological context. Sociologists and human rights activists now place the onus on society to make the necessary structural changes for enabling persons with disabilities to realise their full potential and make a contribution to the state.  This attempt to bring about a paradigm shift led to the adoption of the UN Convention on the Rights of Persons with Disabilities in 2008 — which Pakistan has also signed but has yet to ratify.  In view of the sociological research that has been done on the basis of the narratives and experiences of people with disabilities, the modern approach no longer focuses on the limitations of individuals or holds them to be the cause for the multiple constraints that are imposed on them. The social interpretation now is that people with disability are disabled not by their impairment but by economic, social and physical barriers erected to marginalise them.

With capitalism having a field day and ruthless consumerism dictating the system’s working, the disability movement has suffered a setback. Since the convention was opened to signature in 2007 only 143 states have signed it but only 70 ratifications have been received. Of the 87 signatories to the protocol only 45 have ratified it. The protocol gives the right to the citizens of a state to complain against their government to the committee established by the convention. The ethos of the Marxian principle of “from each according to his ability to each according to his need” has been dying and the wielders of power at every level marginalise people with disabilities even though they may be competent and skilled in their own fields.  It is remarkable how people with disabilities have taken it upon themselves to help themselves. With minimal assistance from the government, philanthropists have gone to unprecedented lengths to set up institutions to train and facilitate the mainstreaming of people with disabilities.

Take the Ida Rieu Welfare Organisation in Karachi for example. I revisited it last week after more than a decade. The occasion was a seminar arranged by their teachers’ resource centre. It was inspiring to see the development that has taken place there. In a country where institutions are breaking down it cheers the heart to find enterprising people who continue to build. In the year 2000 the Panjwani School Complex for the Blind started functioning with a school and college for children with visual disabilities, there being another school for children with hearing disability.  With a history of 86 years of dedicated service behind it, the institution is a memorial to honour Ida Rieu, the wife of a British civil servant who rose to be the commissioner of Sindh in 1919. Ida devoted her life to social welfare activities and in the process won the hearts of the people of Sindh. This institution terms its vision to be “turning disability into ability” by providing knowledge and training to the disabled to mainstream them in society.  With about 200 children in school and another 30 studying for their graduate and Master’s programme in college, Ida Rieu is producing excellent manpower and womanpower every year under the tutelage of 35 teachers, five of whom have visual disability. It is here that I met Shazia Hasan Rizvi who is the programme manager and also takes computer classes. Every student is trained to operate the computer with the JAWS (Job Accessed With Sound) programme.

Shazia lost her sight when she was eight but that did not deter her from studying. She graduated from Karachi University and also did a diploma course in computers. Now she is passing on her skills — and also her motivation — to others with visual disability. To facilitate the empowerment of persons with disabilities, Shazia arranges for the recording of audio books and organises workshops for teachers and parents.  When I asked her if society facilitates the mainstreaming of the youth who graduate from Ida Rieu, Shazia identified the barriers they face. The Board of Secondary Education, Karachi, refuses to allow candidates appearing for their school-leaving examination to use Braille. It insists on their hiring the services of an amanuensis to write out their script — quite a cumbersome process. Shazia suggests that candidates with visual disability be allowed to use a JAWS-fitted computer. Why not?  Another problem her students face is in job placement. Some organisations have a very practical and fair approach. If a person qualifies he is hired and is provided facilities to overcome the limitation created by his disability. But that is not the norm. In most cases employers reject applications from persons with disabilities without even testing/interviewing them.

This is social justice denied and Badri Raina, a retired teacher of English in Delhi University who writes extensively on culture, politics and society for ZMag, captures this injustice succinctly (excerpts quoted):

Having disabled the world,
You turn around and call us
Disabled.
You have eyes, hands, legs.
And all you do is kill and maim,
From antipode to antipode.

Your abled greed
Makes of the earth
A vengeful ball of catastrophe,
Promising apocalypse
Against all your leaps of science.

Disabled we may be
In eye, hand, leg, or feet,
Our able minds wish nothing

But well.
We have no hand but write
With our toe;
We have no legs but run miles
Every day in what we make
With our hands;
We have no eyes but see far, far
Beyond your black-hearted blindness.

When we love.
We love not for a fleeting hour,
But for ever.
And when we sing, our inward eye
Draws inexhaustible melody
From god’s own navel.

By Zubeida Mustafa

Dawn, Pakistan,
Wednesday, 07 Oct, 2009