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Texas advocates rally against cuts to community-based disability services there
Fromm The Dallas Morning News:
AUSTIN – Proposed cuts in community-based care for the elderly, the disabled and the mentally ill would increase wait times for services and eventually impose higher costs on the state and many counties, protesters warned Sept. 1.
Speakers at a Capitol rally said more Texans could stay in their homes if they received services for physical frailty, mental illness and intellectual disabilities. Recently proposed cuts, however, threaten programs that promote independent living – and endanger people's lives, several people said.
"A lot of us are going to end up dead," Bastrop County resident Laura Myers-Doughty said, referring to 20,000 people who would lose community-based mental health treatment and hundreds who would no longer be cared for in state mental hospitals.
The state, which is facing a shortfall of as much as $18 billion in the next two-year budget, is a long way from deciding on cuts. But leaders have asked agencies to outline how they would cut 10 percent from their current spending in 2012-13.
The health department said that, among other things, it would save $124 million by closing 12 percent of beds at five mental hospitals, including Terrell State, and reducing by about 10 percent those served in community programs – currently, about 191,000.
"That's not the way to go," said Myers-Doughty, 37, a mother of two.
She said she suffered abuse as a child and has been hospitalized repeatedly for major depression and post-traumatic stress. Community services and after-care provided by Austin State Hospital have helped stabilize her and her son Zach, 13, who also has depression, she said.
Robin Peyson of NAMI Texas, the state chapter of the National Alliance on Mental Illness, said the cuts would drive mentally ill Texans into jails and public hospital emergency rooms.
"This just results in cost shifting to county budgets and it sets people up for crisis, where it just costs more money to serve them," Peyson said.
At the "Invest in Community" rally, others warned that proposed cuts would undermine last year's landmark agreement to fix dangerous conditions inside Texas' institutions for the mentally disabled and provide community-based care for nearly 8,000 people stuck on long waiting lists.
The Department of Aging and Disability Services recently submitted a budget request saying that unless it gets money to replace federal stimulus funds and maintain the 8,000 new slots for community services, it will have to suspend supports for 13,400 people.
AUSTIN – Proposed cuts in community-based care for the elderly, the disabled and the mentally ill would increase wait times for services and eventually impose higher costs on the state and many counties, protesters warned Sept. 1.
Speakers at a Capitol rally said more Texans could stay in their homes if they received services for physical frailty, mental illness and intellectual disabilities. Recently proposed cuts, however, threaten programs that promote independent living – and endanger people's lives, several people said.
"A lot of us are going to end up dead," Bastrop County resident Laura Myers-Doughty said, referring to 20,000 people who would lose community-based mental health treatment and hundreds who would no longer be cared for in state mental hospitals.
The state, which is facing a shortfall of as much as $18 billion in the next two-year budget, is a long way from deciding on cuts. But leaders have asked agencies to outline how they would cut 10 percent from their current spending in 2012-13.
The health department said that, among other things, it would save $124 million by closing 12 percent of beds at five mental hospitals, including Terrell State, and reducing by about 10 percent those served in community programs – currently, about 191,000.
"That's not the way to go," said Myers-Doughty, 37, a mother of two.
She said she suffered abuse as a child and has been hospitalized repeatedly for major depression and post-traumatic stress. Community services and after-care provided by Austin State Hospital have helped stabilize her and her son Zach, 13, who also has depression, she said.
Robin Peyson of NAMI Texas, the state chapter of the National Alliance on Mental Illness, said the cuts would drive mentally ill Texans into jails and public hospital emergency rooms.
"This just results in cost shifting to county budgets and it sets people up for crisis, where it just costs more money to serve them," Peyson said.
At the "Invest in Community" rally, others warned that proposed cuts would undermine last year's landmark agreement to fix dangerous conditions inside Texas' institutions for the mentally disabled and provide community-based care for nearly 8,000 people stuck on long waiting lists.
The Department of Aging and Disability Services recently submitted a budget request saying that unless it gets money to replace federal stimulus funds and maintain the 8,000 new slots for community services, it will have to suspend supports for 13,400 people.
Africa makes progress in polio immunization
From Afrique en lingue:
MALABO, Equatorial Guinea - Significant progress has been made in immunization coverage and efforts to eradicate polio in the African Region, but challenges remain and immediate remedial actions need to be taken, according to a technical document being discussed Wednesday by the ongoing 60th Session of the WHO Regional Committee for Africa in Malabo, Equatorial Guinea.
Among the achievements listed in the document is an 85 % coverage for the third dose of DPT-containing vaccine in 2009, compared to 82 %in 2008, with 20 Member States reporting at least 90 % coverage at national level in 2009.
Progress was also recorded in the introduction of new vaccines such as Hepatitis B and Haemophilus Influenza b type vaccines in 45 and 43 countries respectively.
The document said that steady progress was reported in interrupting wild poliovirus transmission in countries with Nigeria, the only polio-endemic country in the Region, reporting only two polio cases at the at the end of April 2010, compared to 236 cases at the same period in 2009.
With regard to measles, the document points out that estimated deaths due to the disease in 2008 had reduced by 92% (representing 28,000 deaths), compared to 2000 levels (371,000 deaths) mainly as a result of the supplemental immunization activities conducted in the Region.
Still, said the document, several challenges face the Region. These include issues related to immunization policy and planning such as failure by countries to update policies to include recent developments; non-enforcement of existing legislation requiring presentation of the immunization status of children at school entry, and low capacity to plan and manage implementation measures targeting hard to-reach areas.
Other challenges are unpredictability of international funding for immunization activities; inadequate infrastructure; low demand for and continued use of immunization services; unreliability of data to allow for quality monitoring and evaluation; significant gaps in meeting surveillance indicators of vaccine-preventable diseases, and limited operational research on immunization in the Africa Region.
The document lists ten recommendations aimed at improving routine immunization activities and accelerating polio eradication in the Region.
These include integrating immunization policy into national health development policies and strategic plans, with immunization interventions quantified, costed and incorporated in the various components of national health systems strengthening; Increasing immunization financing by ensuring that adequate funds are allocated and actually disbursed for routine immunization and polio eradication initiatives and Fostering partnership for immunization through advocacy activities and mobilization of other sectors, leaders and communities to support polio eradication and high immunization coverage.
Others are improving access to new vaccines by intensifying advocacy for reducing the prices of vaccines; Enhancing institutional, human resource and managerial capacity; Broadening community awareness, participation and ownership; Strengthening monitoring and evaluation; Strengthening surveillance of vaccine-preventable diseases; Strengthening immunization research, and Institutionalizing an annual African Immunization Week as a means of sustaining advocacy and improving the delivery and uptake of immunization services.
MALABO, Equatorial Guinea - Significant progress has been made in immunization coverage and efforts to eradicate polio in the African Region, but challenges remain and immediate remedial actions need to be taken, according to a technical document being discussed Wednesday by the ongoing 60th Session of the WHO Regional Committee for Africa in Malabo, Equatorial Guinea.
Among the achievements listed in the document is an 85 % coverage for the third dose of DPT-containing vaccine in 2009, compared to 82 %in 2008, with 20 Member States reporting at least 90 % coverage at national level in 2009.
Progress was also recorded in the introduction of new vaccines such as Hepatitis B and Haemophilus Influenza b type vaccines in 45 and 43 countries respectively.
The document said that steady progress was reported in interrupting wild poliovirus transmission in countries with Nigeria, the only polio-endemic country in the Region, reporting only two polio cases at the at the end of April 2010, compared to 236 cases at the same period in 2009.
With regard to measles, the document points out that estimated deaths due to the disease in 2008 had reduced by 92% (representing 28,000 deaths), compared to 2000 levels (371,000 deaths) mainly as a result of the supplemental immunization activities conducted in the Region.
Still, said the document, several challenges face the Region. These include issues related to immunization policy and planning such as failure by countries to update policies to include recent developments; non-enforcement of existing legislation requiring presentation of the immunization status of children at school entry, and low capacity to plan and manage implementation measures targeting hard to-reach areas.
Other challenges are unpredictability of international funding for immunization activities; inadequate infrastructure; low demand for and continued use of immunization services; unreliability of data to allow for quality monitoring and evaluation; significant gaps in meeting surveillance indicators of vaccine-preventable diseases, and limited operational research on immunization in the Africa Region.
The document lists ten recommendations aimed at improving routine immunization activities and accelerating polio eradication in the Region.
These include integrating immunization policy into national health development policies and strategic plans, with immunization interventions quantified, costed and incorporated in the various components of national health systems strengthening; Increasing immunization financing by ensuring that adequate funds are allocated and actually disbursed for routine immunization and polio eradication initiatives and Fostering partnership for immunization through advocacy activities and mobilization of other sectors, leaders and communities to support polio eradication and high immunization coverage.
Others are improving access to new vaccines by intensifying advocacy for reducing the prices of vaccines; Enhancing institutional, human resource and managerial capacity; Broadening community awareness, participation and ownership; Strengthening monitoring and evaluation; Strengthening surveillance of vaccine-preventable diseases; Strengthening immunization research, and Institutionalizing an annual African Immunization Week as a means of sustaining advocacy and improving the delivery and uptake of immunization services.
Mental exercises may only hide signs of Alzheimer's, new study says
From HealthDay News:
Reading, crossword puzzles and other mentally stimulating activities have pros and cons when it comes to Alzheimer's disease, new research suggests.
In line with prior research, the study finds that such mental activity may slow declines in thinking and memory during normal old age.
But folks who loved these pursuits actually displayed a hastening of their mental decline once symptoms of dementia began to set in, the researchers say.
"We think there's a trade-off," said senior study author Robert Wilson of Rush University Medical Center in Chicago. Keeping mentally active means that there is "a little more time during which the person is cognitively competent and independent and a little less time in a disabled and dependent state" once dementia does set in, said Wilson, who is senior neuropsychologist at Rush's Alzheimer's Disease Center.
The findings were published online Sept. 1 in Neurology.
Previous work has suggested that engaging in cognitively challenging activities may help ward off the appearance of dementia in older people. To test this, Wilson and his co-workers tracked almost 1,200 older individuals over nearly 12 years.
The team assessed each person's engagement in mentally stimulating pursuits using a 5-point "cogntive activity" scale.
At the time of study enrollment, all of the participants were free of dementia; by the study's end, 614 people were cognitively normal, 395 showed mild cognitive impairment, and 148 had Alzheimer's disease.
The researchers found that increased cognitive activity among normal individuals -- things such as listening to the radio, watching television, reading, playing games and going to museums -- meant that they were less likely to experience cognitive decline over several years.
Specifically, for each gained point on the cognitive activity scale, the rate of mental decline fell by 52 percent over 6 years.
But the opposite was true for those who did go on to develop dementia -- in that case, people who had loved mentally challenging activities actually showed a quicker mental decline after the illness took over. In fact, the rate of decline accelerated by 42 percent for each point on the cognitive activity scale, the researchers report.
Wilson and his colleagues believe that this discrepancy may be explained by the accumulation of neurodegenerative lesions called plaques and tangles in the brains of dementia patients.
Previous work has suggested that mentally stimulating exercises do not actually prevent these lesions from accumulating. Instead, they allow individuals to remain relatively cognitively normal for a while longer, even in the presence of those lesions.
However, once the plaques and tangles accumulate to a certain threshold, high cognitive activity can no longer prevent symptoms of dementia, and the behavioral signs of the disease appear.
Because people can behave normally for years -- even while brain lesions are appearing -- at the point at which they're first diagnosed with dementia, a person with a history of cognitive activity actually has more plaques and tangles in their brain than a person who wasn't so cognitively active, Wilson believes.
"The person who has a history of being cognitively active actually has more of the pathology in their brain, and so really has more severe disease," he theorized. "That's why they decline more rapidly from that point on."
According to the authors, the results suggest that mental exercises help prevent the onset of dementia, but only if they're started before signs of cognitive impairment appear -- after that point, the brain is probably too damaged for such interventions to make a difference.
"The results do suggest that mental exercises help stave off dementia but then increase mental decline after dementia onset," said Charles Hall, professor of neurology at Albert Einstein College of Medicine, New York City. He cautioned that it remains possible that some unknown factor still connects mental activity with these effects.
To be sure that there is a direct causal relationship between mental exercises and the effects the authors found, "it's really important that we do intervention studies to test this hypothesis," Hall said.
Reading, crossword puzzles and other mentally stimulating activities have pros and cons when it comes to Alzheimer's disease, new research suggests.
In line with prior research, the study finds that such mental activity may slow declines in thinking and memory during normal old age.
But folks who loved these pursuits actually displayed a hastening of their mental decline once symptoms of dementia began to set in, the researchers say.
"We think there's a trade-off," said senior study author Robert Wilson of Rush University Medical Center in Chicago. Keeping mentally active means that there is "a little more time during which the person is cognitively competent and independent and a little less time in a disabled and dependent state" once dementia does set in, said Wilson, who is senior neuropsychologist at Rush's Alzheimer's Disease Center.
The findings were published online Sept. 1 in Neurology.
Previous work has suggested that engaging in cognitively challenging activities may help ward off the appearance of dementia in older people. To test this, Wilson and his co-workers tracked almost 1,200 older individuals over nearly 12 years.
The team assessed each person's engagement in mentally stimulating pursuits using a 5-point "cogntive activity" scale.
At the time of study enrollment, all of the participants were free of dementia; by the study's end, 614 people were cognitively normal, 395 showed mild cognitive impairment, and 148 had Alzheimer's disease.
The researchers found that increased cognitive activity among normal individuals -- things such as listening to the radio, watching television, reading, playing games and going to museums -- meant that they were less likely to experience cognitive decline over several years.
Specifically, for each gained point on the cognitive activity scale, the rate of mental decline fell by 52 percent over 6 years.
But the opposite was true for those who did go on to develop dementia -- in that case, people who had loved mentally challenging activities actually showed a quicker mental decline after the illness took over. In fact, the rate of decline accelerated by 42 percent for each point on the cognitive activity scale, the researchers report.
Wilson and his colleagues believe that this discrepancy may be explained by the accumulation of neurodegenerative lesions called plaques and tangles in the brains of dementia patients.
Previous work has suggested that mentally stimulating exercises do not actually prevent these lesions from accumulating. Instead, they allow individuals to remain relatively cognitively normal for a while longer, even in the presence of those lesions.
However, once the plaques and tangles accumulate to a certain threshold, high cognitive activity can no longer prevent symptoms of dementia, and the behavioral signs of the disease appear.
Because people can behave normally for years -- even while brain lesions are appearing -- at the point at which they're first diagnosed with dementia, a person with a history of cognitive activity actually has more plaques and tangles in their brain than a person who wasn't so cognitively active, Wilson believes.
"The person who has a history of being cognitively active actually has more of the pathology in their brain, and so really has more severe disease," he theorized. "That's why they decline more rapidly from that point on."
According to the authors, the results suggest that mental exercises help prevent the onset of dementia, but only if they're started before signs of cognitive impairment appear -- after that point, the brain is probably too damaged for such interventions to make a difference.
"The results do suggest that mental exercises help stave off dementia but then increase mental decline after dementia onset," said Charles Hall, professor of neurology at Albert Einstein College of Medicine, New York City. He cautioned that it remains possible that some unknown factor still connects mental activity with these effects.
To be sure that there is a direct causal relationship between mental exercises and the effects the authors found, "it's really important that we do intervention studies to test this hypothesis," Hall said.
Human Rights Commission in India releases book on disability rights
From ANI in India:
NEW DELHI, India -- National Human Rights Commission (NHRC) chairman, Justice K.G. Balakrishnan, on Sept. 3, released a book that focuses on the rights of persons with disabilities.
The book titled "Convention on Rights of Persons with Disabilities - A guide by Commonwealth Secretariat" was released in the presence of a host of luminaries and key members of the NHRC.
An NHRC release said that it has been deeply concerned about the protection and promotion of rights of persons with disabilities. The Commission is of the view that the persons with disabilities should enjoy all human rights on an equal basis with others. Towards this end, the Commission has adopted a multi-pronged approach which includes redressal of individual complaints, legislative and policy reform, spreading of awareness etc.
The Commission has been involved since the formative stages of the UN Convention on Rights of Persons with Disabilities (CRPD). The Commission advocated the ratification of the UN convention and finally the Government of India ratified the Convention on 1st October 2007.
As a follow up action, the Commission appointed a Special Rapporteur on Disability related issues and constituted a Core Advisory Group on Disability to advise the Commission on matters connected with and incidental to the promotion, protection and monitoring of the human rights for persons with disabilities.
With a view to assess whether existing Programmes and Policies for persons with disabilities are having the desired impact and to identify gaps in implementation, if any, and to suggest appropriate strategies to deal with them, the Commission organized five Regional review meetings on Disability during 2008-09 in various parts of the country.
The Commission has advocated to the Government of India for the ratification of Optional Protocol to the UN Convention on the Rights of Persons with Disabilities. The Commission is of the view that the Optional Protocol will strengthen the accountability mechanism and serve as an additional tool for the promotion of the rights of persons with disabilities.
The Commission reviewed The Copy Right (Amendment) Bill, 2010 from Human Rights perspective and noted that it does not meet the demand of print disabled person. With a view to protect the rights of the print disabled people, the Commission made recommendations for amendments in The Copy Right (Amendment) Bill, 2010 which is being examined by the Parliamentary Standing Committee.
With a view to monitor the implementation of various laws, policies, concerning the rights of the persons with disabilities, Special Rapporteurs, NHRC have been visiting various states. The Commission has also asked all the State Governments to give wide publicity to UNPRCD to create awareness regarding the rights of persons with disabilities.
The book enumerates various provisions of the Convention in a very simple and informative manner. It not only clarifies that States should not discriminate against persons with disabilities, but also sets out the many steps that States must take to create an enabling environment so that persons with disabilities can enjoy real equality in society.
urther, this book is also accessible to the persons with visual impairments. This publication has been released simultaneously at the four centers around the world by the Commonwealth Secretariat. In recognition of the work done by NHRC in the field of protecting and promoting Human Rights of persons with disabilities, NHRC is selected as one of the four institutions for releasing this book.
NEW DELHI, India -- National Human Rights Commission (NHRC) chairman, Justice K.G. Balakrishnan, on Sept. 3, released a book that focuses on the rights of persons with disabilities.
The book titled "Convention on Rights of Persons with Disabilities - A guide by Commonwealth Secretariat" was released in the presence of a host of luminaries and key members of the NHRC.
An NHRC release said that it has been deeply concerned about the protection and promotion of rights of persons with disabilities. The Commission is of the view that the persons with disabilities should enjoy all human rights on an equal basis with others. Towards this end, the Commission has adopted a multi-pronged approach which includes redressal of individual complaints, legislative and policy reform, spreading of awareness etc.
The Commission has been involved since the formative stages of the UN Convention on Rights of Persons with Disabilities (CRPD). The Commission advocated the ratification of the UN convention and finally the Government of India ratified the Convention on 1st October 2007.
As a follow up action, the Commission appointed a Special Rapporteur on Disability related issues and constituted a Core Advisory Group on Disability to advise the Commission on matters connected with and incidental to the promotion, protection and monitoring of the human rights for persons with disabilities.
With a view to assess whether existing Programmes and Policies for persons with disabilities are having the desired impact and to identify gaps in implementation, if any, and to suggest appropriate strategies to deal with them, the Commission organized five Regional review meetings on Disability during 2008-09 in various parts of the country.
The Commission has advocated to the Government of India for the ratification of Optional Protocol to the UN Convention on the Rights of Persons with Disabilities. The Commission is of the view that the Optional Protocol will strengthen the accountability mechanism and serve as an additional tool for the promotion of the rights of persons with disabilities.
The Commission reviewed The Copy Right (Amendment) Bill, 2010 from Human Rights perspective and noted that it does not meet the demand of print disabled person. With a view to protect the rights of the print disabled people, the Commission made recommendations for amendments in The Copy Right (Amendment) Bill, 2010 which is being examined by the Parliamentary Standing Committee.
With a view to monitor the implementation of various laws, policies, concerning the rights of the persons with disabilities, Special Rapporteurs, NHRC have been visiting various states. The Commission has also asked all the State Governments to give wide publicity to UNPRCD to create awareness regarding the rights of persons with disabilities.
The book enumerates various provisions of the Convention in a very simple and informative manner. It not only clarifies that States should not discriminate against persons with disabilities, but also sets out the many steps that States must take to create an enabling environment so that persons with disabilities can enjoy real equality in society.
urther, this book is also accessible to the persons with visual impairments. This publication has been released simultaneously at the four centers around the world by the Commonwealth Secretariat. In recognition of the work done by NHRC in the field of protecting and promoting Human Rights of persons with disabilities, NHRC is selected as one of the four institutions for releasing this book.
Maine town finally works on ADA compliance
From The Times Record:
FREEPORT, Maine — Months after a Freeport woman with severe multiple sclerosis filed a human rights complaint alleging discrimination by town officials, the Town Council at 7 p.m. Sept. 7 will consider adopting an Americans with Disabilities Act policy for the town.
At Tuesday’s meeting, councilors also are scheduled to consider other agenda items related to the disabilities act and human rights.
In May, Marianne McGettigan confirmed that she filed a complaint against Freeport municipal government after she said she was not able to sign a petition because the town clerk had been given no information about accommodations.
On Tuesday, the council will consider action relative to adopting an Americans with Disabilities Act policy for the town, and action relative to approving a form to provide “Notice under the Maine Human Rights and Americans with Disabilities Acts.”
According to the proposed “Town of Freeport Maine Human Rights Act and Americans with Disabilities Act Policy,” a clause titled “Accessibility to Town Buildings” reads, in part: “When possible, the town will provide accessible and barrier-free access for qualified individuals with disabilities to town-owned and leased buildings and will make all reasonable modifications to programs to ensure access in the event a building is not accessible to a qualified individual with disabilities.”
In addition, the council on Tuesday will consider appointing the town’s human resources officer as the town’s human rights coordinator.
In June, Freeport Town Manager Dale Olmstead told the Town Council that the town made — and the Maine Human Rights Commission “signed off on” — a settlement offer to McGettigan, adding, “I think it will be resolved fairly soon.”
But in early July, McGettigan said she has had no communication about any offer, and referred questions about the petition to her attorney.
Patricia Ryan, executive director of the Maine Human Rights Commission, said Thursday that no case involving McGettigan or the town of Freeport has been closed. Ryan said she cannot comment on open cases or confirm that a case has been filed until it has been closed.
FREEPORT, Maine — Months after a Freeport woman with severe multiple sclerosis filed a human rights complaint alleging discrimination by town officials, the Town Council at 7 p.m. Sept. 7 will consider adopting an Americans with Disabilities Act policy for the town.
At Tuesday’s meeting, councilors also are scheduled to consider other agenda items related to the disabilities act and human rights.
In May, Marianne McGettigan confirmed that she filed a complaint against Freeport municipal government after she said she was not able to sign a petition because the town clerk had been given no information about accommodations.
On Tuesday, the council will consider action relative to adopting an Americans with Disabilities Act policy for the town, and action relative to approving a form to provide “Notice under the Maine Human Rights and Americans with Disabilities Acts.”
According to the proposed “Town of Freeport Maine Human Rights Act and Americans with Disabilities Act Policy,” a clause titled “Accessibility to Town Buildings” reads, in part: “When possible, the town will provide accessible and barrier-free access for qualified individuals with disabilities to town-owned and leased buildings and will make all reasonable modifications to programs to ensure access in the event a building is not accessible to a qualified individual with disabilities.”
In addition, the council on Tuesday will consider appointing the town’s human resources officer as the town’s human rights coordinator.
In June, Freeport Town Manager Dale Olmstead told the Town Council that the town made — and the Maine Human Rights Commission “signed off on” — a settlement offer to McGettigan, adding, “I think it will be resolved fairly soon.”
But in early July, McGettigan said she has had no communication about any offer, and referred questions about the petition to her attorney.
Patricia Ryan, executive director of the Maine Human Rights Commission, said Thursday that no case involving McGettigan or the town of Freeport has been closed. Ryan said she cannot comment on open cases or confirm that a case has been filed until it has been closed.
Disabled people – especially women – are often the last to be considered in the aftermath of wars and natural disasters
From Shantha Rau Barriga at The Guardian in the UK. In the picture, Doreen Aciro recovers from reconstructive surgery following an attack by the Lord's Resistance Army in Uganda. Here's the report on disabled women in Uganda from Human Rights Watch.
In the aftermath of war, civil unrest and disaster, there are always untold stories, but only rarely do you hear of the isolation, neglect and abuse of women and girls with disabilities.
Charity lived in a camp for internally displaced persons in northern Uganda for 11 years because of the brutal conflict between the Lord's Resistance Army and the Ugandan government. As a child, she lost the use of her legs due to an undiagnosed illness. When I met her in April, she told me that others in the camp said to her: "You are useless. You are a waste of food. You should just die so that others can eat the food."
While living in the camp, she was raped and had a child. She wanted to report the rape but the rapist's family threatened to take away her child. She'd like to get tested for HIV, but because she would have to crawl a long distance and sleep on the road to get to the testing site, she's resigned to not knowing. She was promised a wheelchair by an aid group, but would have to travel more than 45km to get it.
Unfortunately, Charity's story is not unique. Women and girls with disabilities in northern Uganda experience rampant stigma and exclusion, sexual- and gender-based violence, and insurmountable obstacles to accessing justice and medical care. Before the conflict in Uganda, communities and family members supported people with disabilities. However, years of abductions, displacements and violence have eroded, if not destroyed, these networks.
Some of the women I interviewed were born with disabilities, others had been affected by diseases such as polio, and others were shot or wounded by landmines during the conflict. According to a national survey in 2007, approximately one person in five in Uganda has disabilities. In northern Uganda, because of the long and brutal conflict, disability rates are thought to be even higher. Yet, despite their numbers, individuals with disabilities remain invisible; inconvenient and uncomfortable reminders of the conflict, perceived burdens to redevelopment and renewal.
Now, with greater peace and security, the people of northern Uganda are trying to rebuild their lives. The challenges are daunting as families return home, settle more permanently in the camps, or relocate to start fresh. For women with disabilities, the process is even more complex and gruelling and most don't have the same choices. Many are deciding they are better off remaining in camps, where they may at least be getting some services.
Uganda receives hundreds of millions of dollars in development assistance annually, yet women with disabilities such as Charity are not benefiting. The government has emphasised infrastructure over individual needs, and has done little to consider the particular needs of people with disabilities.
Development plans might include ramps for schools and hospitals, but without a wheelchair or sign language interpreters, access to education or reproductive healthcare is a distant reality.
In rebuilding the north, Uganda and its donors have a chance to change that. People with disabilities should be included in education, programmes to prevent and address sexual- and gender-based violence, reproductive health services, HIV testing, prevention and treatment, and income-generating programmes. Police stations and healthcare centres need ramps, trained staff and sign language interpreters. In planning these efforts, people with disabilities themselves, particularly women, need to be seen and heard.
These lessons apply not only to northern Uganda, but to emergency, conflict and refugee situations around the world. The first step is listening to people with disabilities and recognising their needs and rights: to be treated with dignity, to participate fully in society, to access services, to achieve the highest attainable standard of health.
Of course, all of these efforts will not immediately change the daily stigma and discrimination women with disabilities face, including at the hands of their families and neighbours. But it is a start, and it will inevitably undermine these prejudices and bring individuals with disabilities out of the shadows and into everyday life.
The Ugandan government is among nearly 90 countries that have ratified the UN convention on the rights of persons with disabilities, pledging to give people with disabilities, including women, full equality and freedom from discrimination. The government should ensure that their actions equal their promises. Charity and the millions of women with disabilities in Uganda are counting on it.
In the aftermath of war, civil unrest and disaster, there are always untold stories, but only rarely do you hear of the isolation, neglect and abuse of women and girls with disabilities.
Charity lived in a camp for internally displaced persons in northern Uganda for 11 years because of the brutal conflict between the Lord's Resistance Army and the Ugandan government. As a child, she lost the use of her legs due to an undiagnosed illness. When I met her in April, she told me that others in the camp said to her: "You are useless. You are a waste of food. You should just die so that others can eat the food."
While living in the camp, she was raped and had a child. She wanted to report the rape but the rapist's family threatened to take away her child. She'd like to get tested for HIV, but because she would have to crawl a long distance and sleep on the road to get to the testing site, she's resigned to not knowing. She was promised a wheelchair by an aid group, but would have to travel more than 45km to get it.
Unfortunately, Charity's story is not unique. Women and girls with disabilities in northern Uganda experience rampant stigma and exclusion, sexual- and gender-based violence, and insurmountable obstacles to accessing justice and medical care. Before the conflict in Uganda, communities and family members supported people with disabilities. However, years of abductions, displacements and violence have eroded, if not destroyed, these networks.
Some of the women I interviewed were born with disabilities, others had been affected by diseases such as polio, and others were shot or wounded by landmines during the conflict. According to a national survey in 2007, approximately one person in five in Uganda has disabilities. In northern Uganda, because of the long and brutal conflict, disability rates are thought to be even higher. Yet, despite their numbers, individuals with disabilities remain invisible; inconvenient and uncomfortable reminders of the conflict, perceived burdens to redevelopment and renewal.
Now, with greater peace and security, the people of northern Uganda are trying to rebuild their lives. The challenges are daunting as families return home, settle more permanently in the camps, or relocate to start fresh. For women with disabilities, the process is even more complex and gruelling and most don't have the same choices. Many are deciding they are better off remaining in camps, where they may at least be getting some services.
Uganda receives hundreds of millions of dollars in development assistance annually, yet women with disabilities such as Charity are not benefiting. The government has emphasised infrastructure over individual needs, and has done little to consider the particular needs of people with disabilities.
Development plans might include ramps for schools and hospitals, but without a wheelchair or sign language interpreters, access to education or reproductive healthcare is a distant reality.
In rebuilding the north, Uganda and its donors have a chance to change that. People with disabilities should be included in education, programmes to prevent and address sexual- and gender-based violence, reproductive health services, HIV testing, prevention and treatment, and income-generating programmes. Police stations and healthcare centres need ramps, trained staff and sign language interpreters. In planning these efforts, people with disabilities themselves, particularly women, need to be seen and heard.
These lessons apply not only to northern Uganda, but to emergency, conflict and refugee situations around the world. The first step is listening to people with disabilities and recognising their needs and rights: to be treated with dignity, to participate fully in society, to access services, to achieve the highest attainable standard of health.
Of course, all of these efforts will not immediately change the daily stigma and discrimination women with disabilities face, including at the hands of their families and neighbours. But it is a start, and it will inevitably undermine these prejudices and bring individuals with disabilities out of the shadows and into everyday life.
The Ugandan government is among nearly 90 countries that have ratified the UN convention on the rights of persons with disabilities, pledging to give people with disabilities, including women, full equality and freedom from discrimination. The government should ensure that their actions equal their promises. Charity and the millions of women with disabilities in Uganda are counting on it.
Taiwanese student invents free photography software so blind people can feel pictures
From Taiwan News:
A Taiwanese student has invented free software which allows visually impaired people to feel pictures, reports said Sept. 2.
Peng Yu-hsuan of National Chung Cheng University in Minhsiung, Chiayi County, said he developed the system, known as "Dark Angel, the blind people's camera," to benefit even more visually impaired people.
The university said that the information technology institute researcher found that prices for computer systems for the blind started at NT$50,000 (US$1,500) with additional necessary aides not coming cheap either. As a result, Peng researched and developed the cell phone-based system with assistance from assistant professor Lo Hsi-wu.
Users take pictures with Google's Android system on their cell phone and transfer them with the assistance of voice recognition and the wireless Bluetooth system to a screen which shows them in relief, Peng said.
Users with sight problems can touch the images and feel the objects in the pictures, he said. Touch replaced sight, and flat images turned into three-dimensional pictures, according to Peng.
The inventor said that during the research process he called in the assistance of a hospital eye specialist and a visually impaired fellow student at the university. Peng said he needed their opinions on whether the system could meet practical everyday needs.
After putting the software online, Peng said he received e-mails of encouragement from all over the world.
A Taiwanese student has invented free software which allows visually impaired people to feel pictures, reports said Sept. 2.
Peng Yu-hsuan of National Chung Cheng University in Minhsiung, Chiayi County, said he developed the system, known as "Dark Angel, the blind people's camera," to benefit even more visually impaired people.
The university said that the information technology institute researcher found that prices for computer systems for the blind started at NT$50,000 (US$1,500) with additional necessary aides not coming cheap either. As a result, Peng researched and developed the cell phone-based system with assistance from assistant professor Lo Hsi-wu.
Users take pictures with Google's Android system on their cell phone and transfer them with the assistance of voice recognition and the wireless Bluetooth system to a screen which shows them in relief, Peng said.
Users with sight problems can touch the images and feel the objects in the pictures, he said. Touch replaced sight, and flat images turned into three-dimensional pictures, according to Peng.
The inventor said that during the research process he called in the assistance of a hospital eye specialist and a visually impaired fellow student at the university. Peng said he needed their opinions on whether the system could meet practical everyday needs.
After putting the software online, Peng said he received e-mails of encouragement from all over the world.
Canadian program creates theatre performance about hiring people with disabilities
From Helen Henderson, Disabilities Reporter at The Toronto Star. In the picture, Anthony Curry and Carrie Gibson star in Not Just Ramps, a play about physical and emotional access issues, to be presented in September by the Job Opportunity Information Network for Persons with Disabilities.
It’s one thing to know your rights, quite another to know how to make them a reality.
The law is on your side if you have a disability and need some flexibility or a particular piece of equipment to make the workplace a level playing field. But how do you handle the issue in a job interview?
“If I waited for an organization to make accommodations to get a job, I’d be always unemployed.”
That’s how one participant put it in a report on a recent roundtable dialogue on workplace inclusion sponsored by Deloitte Canada. “The onus can’t just be on organizations. If we want to make a difference, we should be able to advocate for ourselves.”
Easier said than done.
How do you talk about disability when you’re looking for a job? How do prospective employees and employers explore what they can offer each other? Answering that question is part of the mission of Ontario’s Job Opportunity Information Network (JOIN), a network of community agencies that helps disabled people find jobs and employers recruit qualified candidates with disabilities.
JOIN released the Deloitte report at a business leadership network breakfast this summer. It’s developing a mentoring program to help job seekers with the interview process and for its next business leadership function this month, it will be presenting a little bit of theatre.
Not Just Ramps, featuring Anthony Curry and Carrie Gibson, looks at emotional as well as physical access issues.
As the actors put it, they aim to “explore access on a multitude of levels.” That includes understanding society’s broadly based fear of disabilities, demystifying the labels applied to people with disabilities and affirming the concept of human dignity.
“Making diversity a priority in Canadian organizations is imperative — not just because it is the right thing to do, but because it is critical to the future success of our businesses and our economy, the Deloitte Canada report argues.
“While some progress has been made in the areas of race and gender, people with disabilities continue to be significantly under-represented in our workplaces,” Jane Allen the company’s chief diversity officer says in introducing the report. “Their numbers are growing steadily . . . and it is becoming increasingly important to include this community in corporate Canada.”
Allen says job seekers with disabilities “have to be proactive” in terms of working out the accommodations they need. Learning how to do that effectively will be part of the mentoring project planned with JOIN, she adds.
But the advantages of hiring qualified people with disabilities to businesses are made very clear in the report.
Citing a Statistics Canada survey, it notes that 90 per cent of people with disabilities did as well or better at their jobs than non-disabled co-workers, 86 per cent rated average or better in attendance and staff retention among people disabilities was 72 per cent higher.
Many senior management teams understand the business case for diversity, the Deloitte report notes. However, it adds, “unfortunately, most hiring decisions are made by recruiters and middle managers . . . If those groups are not educated on the benefits of diversity, the need to be inclusive of people with disabilities and the organization’s business case, there will be barriers in the company’s hiring practices.”
For inclusion to work, the Deloitte report emphasizes: “Our number one challenge is attitude — not just of the potential employer, but also of the person with the disability. The individuals must challenge their ideas of themselves and their own strengths and weaknesses, as well as their compromised self-esteem or self-confidence.”
It’s one thing to know your rights, quite another to know how to make them a reality.
The law is on your side if you have a disability and need some flexibility or a particular piece of equipment to make the workplace a level playing field. But how do you handle the issue in a job interview?
“If I waited for an organization to make accommodations to get a job, I’d be always unemployed.”
That’s how one participant put it in a report on a recent roundtable dialogue on workplace inclusion sponsored by Deloitte Canada. “The onus can’t just be on organizations. If we want to make a difference, we should be able to advocate for ourselves.”
Easier said than done.
How do you talk about disability when you’re looking for a job? How do prospective employees and employers explore what they can offer each other? Answering that question is part of the mission of Ontario’s Job Opportunity Information Network (JOIN), a network of community agencies that helps disabled people find jobs and employers recruit qualified candidates with disabilities.
JOIN released the Deloitte report at a business leadership network breakfast this summer. It’s developing a mentoring program to help job seekers with the interview process and for its next business leadership function this month, it will be presenting a little bit of theatre.
Not Just Ramps, featuring Anthony Curry and Carrie Gibson, looks at emotional as well as physical access issues.
As the actors put it, they aim to “explore access on a multitude of levels.” That includes understanding society’s broadly based fear of disabilities, demystifying the labels applied to people with disabilities and affirming the concept of human dignity.
“Making diversity a priority in Canadian organizations is imperative — not just because it is the right thing to do, but because it is critical to the future success of our businesses and our economy, the Deloitte Canada report argues.
“While some progress has been made in the areas of race and gender, people with disabilities continue to be significantly under-represented in our workplaces,” Jane Allen the company’s chief diversity officer says in introducing the report. “Their numbers are growing steadily . . . and it is becoming increasingly important to include this community in corporate Canada.”
Allen says job seekers with disabilities “have to be proactive” in terms of working out the accommodations they need. Learning how to do that effectively will be part of the mentoring project planned with JOIN, she adds.
But the advantages of hiring qualified people with disabilities to businesses are made very clear in the report.
Citing a Statistics Canada survey, it notes that 90 per cent of people with disabilities did as well or better at their jobs than non-disabled co-workers, 86 per cent rated average or better in attendance and staff retention among people disabilities was 72 per cent higher.
Many senior management teams understand the business case for diversity, the Deloitte report notes. However, it adds, “unfortunately, most hiring decisions are made by recruiters and middle managers . . . If those groups are not educated on the benefits of diversity, the need to be inclusive of people with disabilities and the organization’s business case, there will be barriers in the company’s hiring practices.”
For inclusion to work, the Deloitte report emphasizes: “Our number one challenge is attitude — not just of the potential employer, but also of the person with the disability. The individuals must challenge their ideas of themselves and their own strengths and weaknesses, as well as their compromised self-esteem or self-confidence.”
Study links ALS to brain trauma
From The NY Times:
In the 71 years since the Yankees slugger Lou Gehrig (pictured) declared himself “the luckiest man on the face of the earth,” despite dying from a disease that would soon bear his name, he has stood as America’s leading icon of athletic valor struck down by random, inexplicable fate.
A peer-reviewed paper to be published Sept. 1 in a leading journal of neuropathology, however, suggests that the demise of athletes like Gehrig and soldiers given a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.
Although the paper does not discuss Gehrig specifically, its authors in interviews acknowledged the clear implication: Lou Gehrig might not have had Lou Gehrig’s disease.
Doctors at the Veterans Affairs Medical Center in Bedford, Mass., and the Boston University School of Medicine, the primary researchers of brain damage among deceased National Football League players, said that markings in the spinal cords of two players and one boxer who also received a diagnosis of A.L.S. indicated that those men did not have A.L.S. They had a different fatal disease, doctors said, caused by concussionlike trauma, that erodes the central nervous system in similar ways.
The finding could prompt a redirection in the study of motor degeneration in athletes and military veterans being given diagnoses of A.L.S. at rates considerably higher than normal, said several experts in A.L.S. who had seen early versions of the paper. Patients with significant histories of brain trauma could be considered for different types of treatment in the future, perhaps leading toward new pathways for a cure.
“Most A.L.S. patients don’t go to autopsy — there’s no need to look at your brain and spinal cord,” said Dr. Brian Crum, an assistant professor of neurology at the Mayo Clinic in Rochester, Minn. “But a disease can look like A.L.S., it can look like Alzheimer’s, and it’s not when you look at the actual tissue. This is something that needs to be paid attention to.”
The finding’s relevance to Gehrig is less clear. But the Yankees legend had a well-documented history of significant concussions on the baseball field, and perhaps others sustained as a battering-ram football halfback in high school and at Columbia University. Given that, it’s possible that Gehrig’s renowned commitment to playing through injuries like concussions, which resulted in his legendary streak of playing in 2,130 consecutive games over 14 years, could have led to his condition.
“Here he is, the face of his disease, and he may have had a different disease as a result of his athletic experience,” said Dr. Ann McKee, the director of the neuropathology laboratory for the New England Veterans Administration Medical Centers and the lead neuropathologist on the study.
Gehrig’s name does not appear in the paper; his case was discussed in interviews merely as an illustration of the new uncertainty surrounding cases resembling his, said Dr. Robert Stern, who serves with Dr. McKee as co-director of Boston University’s Center for the Study of Traumatic Encephalopathy. The cause of his disease will most likely never be determined because his remains were cremated, and now lie in Kensico Cemetery in Valhalla, N.Y.
More significantly, both doctors said, the finding solidifies a long-suspected connection between A.L.S.-like motor disease and head trauma experienced in collision sports and combat.
“People are being misdiagnosed clinically while they’re alive as having A.L.S. when in fact they have a different motor-neuron disease,” Dr. Stern said. He added, “Scientists will be able to get at a faster understanding of the disease in general, and therefore effective treatments, by knowing more about who’s at risk and who’s not.”
According to the A.L.S. Association, up to 30,000 people in the United States currently have A.L.S., an incurably fatal disease among primarily 40- to 70-year-old men that results in the swift and steady atrophy of all voluntary muscle control. Gehrig was its first prominent victim, dying two years after his 1939 diagnosis; some others, like the British physicist Stephen Hawking, now 68, can live for decades with fully functioning brains inside bodies that have wasted away.
The new finding could be double-edged for organizations fighting A.L.S.: it sheds some light on possible causes and research avenues, but also suggests that Gehrig might not have had it.
“It’s extremely interesting — it builds a more interesting picture, but what this all exactly means about how the disease plays out requires further investigation,” said Dr. Lucie Bruijn, the chief scientist for the A.L.S. Association. Dr. Bruijn described Gehrig as “an important fund-raising tool,” similar to the actor Michael J. Fox having Parkinson’s disease.
“It’s a name and a face that get people to understand what kind of a disease this really is,” she said. “It makes it more personal.”
A link between professional football and A.L.S. follows recent discoveries of on-field brain trauma leading to dementia and other cognitive decline in some N.F.L. veterans. Dr. McKee and her group identified 14 former N.F.L. players since 1960 as having been given diagnoses of A.L.S., a total about eight times higher than what would be expected among men in the United States of similar ages.
However, the doctors cautioned, the existence of the increased number of A.L.S.-like cases should not create the same level of public alarm as the cognitive effects of brain trauma, which affect hundreds of former professionals and perhaps thousands of boys and girls across many youth sports.
Recent epidemiological studies have suggested that brain trauma in sports can be a risk factor for A.L.S.; for example, a 2005 paper found that Italian professional soccer players had developed the disease at rates about six times higher than normal. Studies have also linked service in the United States military to higher risk for A.L.S., possibly because of battlefield collisions and blast injuries.
The study, to be published Wednesday on the Web site of the Journal of Neuropathology & Experimental Neurology, represents the first firm pathological indications that brain trauma results in motor-neuron degeneration, and that the resulting disease (at least in the three men studied) is actually not A.L.S. It is a different disorder with different markings, specifically a pattern of two proteins in the spinal cord that compromise nerve function.
Dr. McKee had already found 12 deceased N.F.L. veterans to have had chronic traumatic encephalopathy, a progressive disease in brain tissue that results in cognitive impairment and eventually dementia. Two of those men — Wally Hilgenberg, a longtime linebacker for the Minnesota Vikings in the 1970s, and Eric Scoggins, who played only three games at linebacker for the 1982 San Francisco 49ers — also had A.L.S. diagnosed by their physicians.
When Dr. McKee examined the spinal-cord tissue of those men, as well as a former boxer who had A.L.S.-like symptoms, she found dramatically high levels of tau and TDP-43, two proteins known to cause motor-neuron degeneration. She said that they would appear in the cord as a result of blows to the brain, with the proteins probably traveling down the spinal cord, rather than direct injury to the spinal cord itself.
Dr. McKee said that because she has never seen that protein pattern in A.L.S. victims without significant histories of brain trauma, she and her team were confident the three athletes did not have A.L.S., but a disorder that erodes its victims’ nervous system in similar ways. McKee added that finding the distinctive pattern in all three men with A.L.S. symptoms was more than enough pathological evidence to make her conclusion.
“If we can create this in laboratory mice, which are easily genetically altered and breed quickly, we can learn about the pathogenesis of this disorder, and then provide treatment,” Dr. McKee said. The consensus among experts is that brain trauma is almost certainly not solely responsible for diseases like this.
Those afflicted probably have genetic factors leading to susceptibility, with concussions serving as catalyst. In that regard, some doctors said, years from now athletes could be tested for the gene that leaves them vulnerable, not unlike how some today check for sickle-cell trait.
More than any other American athlete, perhaps even the player who eventually broke his consecutive games streak, Cal Ripken Jr., Lou Gehrig has come to symbolize a commitment to playing every day, especially through injuries. That renown partly derives from well-documented incidents in which he sustained significant concussions but continued to play in ways now known to be dangerous.
The most notable came in June 1934, when, in an exhibition game, Gehrig was hit with a pitch just above the right eye and was knocked unconscious for what was described in news reports as five minutes. (He was not wearing a batting helmet; such protection was not meaningfully introduced in the major leagues until the 1940s or required until 1958.) He was removed from the game.
Despite a headache, a doctor’s recommendation that he sit out and a bump on his head so large that he had to wear one of Babe Ruth’s larger caps, Gehrig played the next day against the Washington Senators to continue his streak at 1,415 games. “A little thing like that can’t stop us Dutchmen,” Gehrig told a reporter, according to Jonathan Eig’s definitive biography of Gehrig, “Luckiest Man.”
In 1924, during a postgame brawl with the Detroit Tigers, Gehrig swung at Ty Cobb and fell, hit his head on concrete, and was briefly knocked out. While playing first base against the Tigers in September 1930, Gehrig was hit in the face and knocked unconscious by a ground ball. He was knocked out again by an oncoming runner in 1935.
Those are the four incidents in which Gehrig’s being knocked unconscious was notable enough to be reported in newspapers. He most likely sustained other concussions that were never noticed or considered meaningful — for example, when he was hit in the head with a pitch during a 1933 game against Washington but continued playing — either in baseball or while serving as a halfback for Commerce High School in New York and later Columbia University.
“Obviously he played in the days before helmets, and he led with his head and with his shoulders, certainly on the football field,” said Mr. Eig, adding that he found no record of brain injuries in news reports of Gehrig’s football career. “On the baseball field he got knocked around a bit because he could be klutzy. Given the barnstorming he did in the off-season and his football career and style, there’s no telling how many additional shots to the head he took.”
Gehrig’s handling of injuries inspired reverence among fans and the news media. Concussions then almost resembled cigarette smoking, in that what is now known to be harmful was in Gehrig’s time considered benign, even charming. An advertisement for Camel cigarettes that filled the back page of Life magazine included various testimonials to “Larruping Lou’s” playing through injuries, including the 1934 incident.
“Another time, he was knocked out by a ‘bean ball,’ yet next day walloped 3 triples in 5 innings,” the ad reads. “Gehrig’s ‘Iron-Man’ record is proof of his splendid physical condition. As Lou says: ‘All the years I’ve been playing, I’ve been careful about my physical condition. Smoke? I smoke and enjoy it. My cigarette is Camel.’”
Gehrig showed the first signs of degenerative motor disease in 1938, when his hands began to ache and his legs and shoulders gradually weakened. Gehrig’s rickety spring training in 1939 indicated to even casual observers that something was quite wrong; after a poor April, on May 2, Gehrig told Yankees Manager Joe McCarthy that he would not play that day against Detroit, ending his streak at 2,130 games, dating back 14 seasons. He rested for a month before seeking some answers at the Mayo Clinic in June.
The diagnosis was amyotrophic lateral sclerosis, then a virtually unknown disease that doctors explained to the public as a form of “infantile paralysis” resembling polio. It had no known cause, and was not described as fatal. Gehrig’s baseball career was immediately over, and two weeks later, on July 4, he was honored at Yankee Stadium in an on-field ceremony between games of a doubleheader.
Speaking through microphones to more than 60,000 hushed fans, Gehrig took the scene and called himself “the luckiest man on the face of the earth” — a remark that quickly symbolized his humility and, of course, just how unlucky the slugger truly was. Gehrig’s once muscular frame, so seemingly perfect that only a few years before he had auditioned to play Tarzan in the movies, quickly deteriorated.
By the time Gehrig died two years later, A.L.S. was already commonly referred to as Lou Gehrig’s disease, a disorder known as much for the player as for the seemingly arbitrary way in which he was chosen to die from it.
The Mayo Clinic retains Gehrig’s medical records but has never disclosed them per institutional policy, a spokesman said. A neurologist who was allowed to inspect them years ago, Dr. Jay Van Gerpen of the Mayo Clinic in Jacksonville, Fla., was not permitted by the clinic to be interviewed for this article.
In considering how Gehrig’s disease could be pinpointed, Dr. McKee of the Boston University group said that if Gehrig had been embalmed, rather than cremated, she theoretically could examine remaining tissue. He might have had A.L.S., like the more than hundreds of thousands of Americans who have had it since, and who have perhaps taken some solace in how such a famous and admirable man as Gehrig had it, too. Or, given his history of brain injuries, Gehrig might have been like Wally Hilgenberg and the growing number of athletes who, as science evolves, stand with increasing company as testimony to concussions’ shocking cost.
“Lou Gehrig wanted to know everything possible about his own illness — he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease,” Mr. Eig said. “He wouldn’t stick his head in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others.”
In the 71 years since the Yankees slugger Lou Gehrig (pictured) declared himself “the luckiest man on the face of the earth,” despite dying from a disease that would soon bear his name, he has stood as America’s leading icon of athletic valor struck down by random, inexplicable fate.
A peer-reviewed paper to be published Sept. 1 in a leading journal of neuropathology, however, suggests that the demise of athletes like Gehrig and soldiers given a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.
Although the paper does not discuss Gehrig specifically, its authors in interviews acknowledged the clear implication: Lou Gehrig might not have had Lou Gehrig’s disease.
Doctors at the Veterans Affairs Medical Center in Bedford, Mass., and the Boston University School of Medicine, the primary researchers of brain damage among deceased National Football League players, said that markings in the spinal cords of two players and one boxer who also received a diagnosis of A.L.S. indicated that those men did not have A.L.S. They had a different fatal disease, doctors said, caused by concussionlike trauma, that erodes the central nervous system in similar ways.
The finding could prompt a redirection in the study of motor degeneration in athletes and military veterans being given diagnoses of A.L.S. at rates considerably higher than normal, said several experts in A.L.S. who had seen early versions of the paper. Patients with significant histories of brain trauma could be considered for different types of treatment in the future, perhaps leading toward new pathways for a cure.
“Most A.L.S. patients don’t go to autopsy — there’s no need to look at your brain and spinal cord,” said Dr. Brian Crum, an assistant professor of neurology at the Mayo Clinic in Rochester, Minn. “But a disease can look like A.L.S., it can look like Alzheimer’s, and it’s not when you look at the actual tissue. This is something that needs to be paid attention to.”
The finding’s relevance to Gehrig is less clear. But the Yankees legend had a well-documented history of significant concussions on the baseball field, and perhaps others sustained as a battering-ram football halfback in high school and at Columbia University. Given that, it’s possible that Gehrig’s renowned commitment to playing through injuries like concussions, which resulted in his legendary streak of playing in 2,130 consecutive games over 14 years, could have led to his condition.
“Here he is, the face of his disease, and he may have had a different disease as a result of his athletic experience,” said Dr. Ann McKee, the director of the neuropathology laboratory for the New England Veterans Administration Medical Centers and the lead neuropathologist on the study.
Gehrig’s name does not appear in the paper; his case was discussed in interviews merely as an illustration of the new uncertainty surrounding cases resembling his, said Dr. Robert Stern, who serves with Dr. McKee as co-director of Boston University’s Center for the Study of Traumatic Encephalopathy. The cause of his disease will most likely never be determined because his remains were cremated, and now lie in Kensico Cemetery in Valhalla, N.Y.
More significantly, both doctors said, the finding solidifies a long-suspected connection between A.L.S.-like motor disease and head trauma experienced in collision sports and combat.
“People are being misdiagnosed clinically while they’re alive as having A.L.S. when in fact they have a different motor-neuron disease,” Dr. Stern said. He added, “Scientists will be able to get at a faster understanding of the disease in general, and therefore effective treatments, by knowing more about who’s at risk and who’s not.”
According to the A.L.S. Association, up to 30,000 people in the United States currently have A.L.S., an incurably fatal disease among primarily 40- to 70-year-old men that results in the swift and steady atrophy of all voluntary muscle control. Gehrig was its first prominent victim, dying two years after his 1939 diagnosis; some others, like the British physicist Stephen Hawking, now 68, can live for decades with fully functioning brains inside bodies that have wasted away.
The new finding could be double-edged for organizations fighting A.L.S.: it sheds some light on possible causes and research avenues, but also suggests that Gehrig might not have had it.
“It’s extremely interesting — it builds a more interesting picture, but what this all exactly means about how the disease plays out requires further investigation,” said Dr. Lucie Bruijn, the chief scientist for the A.L.S. Association. Dr. Bruijn described Gehrig as “an important fund-raising tool,” similar to the actor Michael J. Fox having Parkinson’s disease.
“It’s a name and a face that get people to understand what kind of a disease this really is,” she said. “It makes it more personal.”
A link between professional football and A.L.S. follows recent discoveries of on-field brain trauma leading to dementia and other cognitive decline in some N.F.L. veterans. Dr. McKee and her group identified 14 former N.F.L. players since 1960 as having been given diagnoses of A.L.S., a total about eight times higher than what would be expected among men in the United States of similar ages.
However, the doctors cautioned, the existence of the increased number of A.L.S.-like cases should not create the same level of public alarm as the cognitive effects of brain trauma, which affect hundreds of former professionals and perhaps thousands of boys and girls across many youth sports.
Recent epidemiological studies have suggested that brain trauma in sports can be a risk factor for A.L.S.; for example, a 2005 paper found that Italian professional soccer players had developed the disease at rates about six times higher than normal. Studies have also linked service in the United States military to higher risk for A.L.S., possibly because of battlefield collisions and blast injuries.
The study, to be published Wednesday on the Web site of the Journal of Neuropathology & Experimental Neurology, represents the first firm pathological indications that brain trauma results in motor-neuron degeneration, and that the resulting disease (at least in the three men studied) is actually not A.L.S. It is a different disorder with different markings, specifically a pattern of two proteins in the spinal cord that compromise nerve function.
Dr. McKee had already found 12 deceased N.F.L. veterans to have had chronic traumatic encephalopathy, a progressive disease in brain tissue that results in cognitive impairment and eventually dementia. Two of those men — Wally Hilgenberg, a longtime linebacker for the Minnesota Vikings in the 1970s, and Eric Scoggins, who played only three games at linebacker for the 1982 San Francisco 49ers — also had A.L.S. diagnosed by their physicians.
When Dr. McKee examined the spinal-cord tissue of those men, as well as a former boxer who had A.L.S.-like symptoms, she found dramatically high levels of tau and TDP-43, two proteins known to cause motor-neuron degeneration. She said that they would appear in the cord as a result of blows to the brain, with the proteins probably traveling down the spinal cord, rather than direct injury to the spinal cord itself.
Dr. McKee said that because she has never seen that protein pattern in A.L.S. victims without significant histories of brain trauma, she and her team were confident the three athletes did not have A.L.S., but a disorder that erodes its victims’ nervous system in similar ways. McKee added that finding the distinctive pattern in all three men with A.L.S. symptoms was more than enough pathological evidence to make her conclusion.
“If we can create this in laboratory mice, which are easily genetically altered and breed quickly, we can learn about the pathogenesis of this disorder, and then provide treatment,” Dr. McKee said. The consensus among experts is that brain trauma is almost certainly not solely responsible for diseases like this.
Those afflicted probably have genetic factors leading to susceptibility, with concussions serving as catalyst. In that regard, some doctors said, years from now athletes could be tested for the gene that leaves them vulnerable, not unlike how some today check for sickle-cell trait.
More than any other American athlete, perhaps even the player who eventually broke his consecutive games streak, Cal Ripken Jr., Lou Gehrig has come to symbolize a commitment to playing every day, especially through injuries. That renown partly derives from well-documented incidents in which he sustained significant concussions but continued to play in ways now known to be dangerous.
The most notable came in June 1934, when, in an exhibition game, Gehrig was hit with a pitch just above the right eye and was knocked unconscious for what was described in news reports as five minutes. (He was not wearing a batting helmet; such protection was not meaningfully introduced in the major leagues until the 1940s or required until 1958.) He was removed from the game.
Despite a headache, a doctor’s recommendation that he sit out and a bump on his head so large that he had to wear one of Babe Ruth’s larger caps, Gehrig played the next day against the Washington Senators to continue his streak at 1,415 games. “A little thing like that can’t stop us Dutchmen,” Gehrig told a reporter, according to Jonathan Eig’s definitive biography of Gehrig, “Luckiest Man.”
In 1924, during a postgame brawl with the Detroit Tigers, Gehrig swung at Ty Cobb and fell, hit his head on concrete, and was briefly knocked out. While playing first base against the Tigers in September 1930, Gehrig was hit in the face and knocked unconscious by a ground ball. He was knocked out again by an oncoming runner in 1935.
Those are the four incidents in which Gehrig’s being knocked unconscious was notable enough to be reported in newspapers. He most likely sustained other concussions that were never noticed or considered meaningful — for example, when he was hit in the head with a pitch during a 1933 game against Washington but continued playing — either in baseball or while serving as a halfback for Commerce High School in New York and later Columbia University.
“Obviously he played in the days before helmets, and he led with his head and with his shoulders, certainly on the football field,” said Mr. Eig, adding that he found no record of brain injuries in news reports of Gehrig’s football career. “On the baseball field he got knocked around a bit because he could be klutzy. Given the barnstorming he did in the off-season and his football career and style, there’s no telling how many additional shots to the head he took.”
Gehrig’s handling of injuries inspired reverence among fans and the news media. Concussions then almost resembled cigarette smoking, in that what is now known to be harmful was in Gehrig’s time considered benign, even charming. An advertisement for Camel cigarettes that filled the back page of Life magazine included various testimonials to “Larruping Lou’s” playing through injuries, including the 1934 incident.
“Another time, he was knocked out by a ‘bean ball,’ yet next day walloped 3 triples in 5 innings,” the ad reads. “Gehrig’s ‘Iron-Man’ record is proof of his splendid physical condition. As Lou says: ‘All the years I’ve been playing, I’ve been careful about my physical condition. Smoke? I smoke and enjoy it. My cigarette is Camel.’”
Gehrig showed the first signs of degenerative motor disease in 1938, when his hands began to ache and his legs and shoulders gradually weakened. Gehrig’s rickety spring training in 1939 indicated to even casual observers that something was quite wrong; after a poor April, on May 2, Gehrig told Yankees Manager Joe McCarthy that he would not play that day against Detroit, ending his streak at 2,130 games, dating back 14 seasons. He rested for a month before seeking some answers at the Mayo Clinic in June.
The diagnosis was amyotrophic lateral sclerosis, then a virtually unknown disease that doctors explained to the public as a form of “infantile paralysis” resembling polio. It had no known cause, and was not described as fatal. Gehrig’s baseball career was immediately over, and two weeks later, on July 4, he was honored at Yankee Stadium in an on-field ceremony between games of a doubleheader.
Speaking through microphones to more than 60,000 hushed fans, Gehrig took the scene and called himself “the luckiest man on the face of the earth” — a remark that quickly symbolized his humility and, of course, just how unlucky the slugger truly was. Gehrig’s once muscular frame, so seemingly perfect that only a few years before he had auditioned to play Tarzan in the movies, quickly deteriorated.
By the time Gehrig died two years later, A.L.S. was already commonly referred to as Lou Gehrig’s disease, a disorder known as much for the player as for the seemingly arbitrary way in which he was chosen to die from it.
The Mayo Clinic retains Gehrig’s medical records but has never disclosed them per institutional policy, a spokesman said. A neurologist who was allowed to inspect them years ago, Dr. Jay Van Gerpen of the Mayo Clinic in Jacksonville, Fla., was not permitted by the clinic to be interviewed for this article.
In considering how Gehrig’s disease could be pinpointed, Dr. McKee of the Boston University group said that if Gehrig had been embalmed, rather than cremated, she theoretically could examine remaining tissue. He might have had A.L.S., like the more than hundreds of thousands of Americans who have had it since, and who have perhaps taken some solace in how such a famous and admirable man as Gehrig had it, too. Or, given his history of brain injuries, Gehrig might have been like Wally Hilgenberg and the growing number of athletes who, as science evolves, stand with increasing company as testimony to concussions’ shocking cost.
“Lou Gehrig wanted to know everything possible about his own illness — he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease,” Mr. Eig said. “He wouldn’t stick his head in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others.”
Heather Mills now training in Austria, readying for her bid to make British Winter Paralympics team in 2014
From PlanetSki.eu:
The ex-wife of Sir Paul McCartney, Heather Mills, is hoping to take part in the Paralympics in Sochi in 2014 and is now training in Austria. She has been out on the Mölltaler glacier.
The news is reported in the Austrian press.
She is apparently training with her coach, according to a report in the Kleine Zeitug newspaper.
We have already reported on PlanetSKI how the 42-year old wants to represent her country at the Winter Paralympic Games.
Before she lost her leg in a road accident she was a keen skier and has since taken part in charity events in the UK as we have also reported on PlanetSKI.
"I'm training on the Mölltaler Glacier," she has said from Austria. "I came here to go skiing many years ago, before I was wearing a prosthesis. When I felt like skiing recently, Carinthia came into my mind immediately."
"I've been skiing for many years and I'm much better at that than ice skating, so I'm training hard to try to get on the British Paralympic downhill team," she said earier this year.
"Having loved sport my whole life, competing in a Paralympics would be a dream come true."
"She's incredibly ambitious. It's outstanding what she achieves wearing a prosthesis," her coach, Alexander Koll is reported as saying.
While in Austria she has also reportedly won an army shooting contest, according to a report in the Austrian Times.
Apparently locals have named her "Hedwig" because they find it difficult to pronounce "Heather".
The ex-wife of Sir Paul McCartney, Heather Mills, is hoping to take part in the Paralympics in Sochi in 2014 and is now training in Austria. She has been out on the Mölltaler glacier.
The news is reported in the Austrian press.
She is apparently training with her coach, according to a report in the Kleine Zeitug newspaper.
We have already reported on PlanetSKI how the 42-year old wants to represent her country at the Winter Paralympic Games.
Before she lost her leg in a road accident she was a keen skier and has since taken part in charity events in the UK as we have also reported on PlanetSKI.
"I'm training on the Mölltaler Glacier," she has said from Austria. "I came here to go skiing many years ago, before I was wearing a prosthesis. When I felt like skiing recently, Carinthia came into my mind immediately."
"I've been skiing for many years and I'm much better at that than ice skating, so I'm training hard to try to get on the British Paralympic downhill team," she said earier this year.
"Having loved sport my whole life, competing in a Paralympics would be a dream come true."
"She's incredibly ambitious. It's outstanding what she achieves wearing a prosthesis," her coach, Alexander Koll is reported as saying.
While in Austria she has also reportedly won an army shooting contest, according to a report in the Austrian Times.
Apparently locals have named her "Hedwig" because they find it difficult to pronounce "Heather".
New Zealand wheelchair user advocates for cheaper tickets at concert venues; request granted after pressure from Human Rights Commission
From The Dominion Post in NZ:
Ticketek has been pressured to offer cheaper tickets to wheelchair users at November's U2 and Jay-Z concert after a warning from the Human Rights Commission.
Disability advocate Red Nicholson (pictured) wrote to organisers of the show Sept. 2 after learning that the cheapest wheelchair-accessible seating available was $179 plus booking fee, while general admission tickets started at $39.
He paid $380 for himself and a support person.
Mr Nicholson said that, although he had not been counting on getting a $39 ticket, he had budgeted on buying general admission passes for about $100 each.
"I really wanted to see Jay-Z live, so I had to use a significant amount more of my savings, but I couldn't wait around for some sort of resolution. It's about choice – one group of people, who are arguably on a lower average income, being asked to pony up $180 while everyone else has the opportunity to pay less."
After queries from The Dominion Post, concert organisers agreed to open up an allocated number of seats in the reserved section at a lower price for wheelchair users.
Ticketek has promised to move Mr Nicholson and refund part of his ticket price, and said its original pricing was "not intended to offend or discriminate".
Human Rights Commissioner Judy McGregor said it could be considered discriminatory to force wheelchair users to pay more for tickets.
"If people in wheelchairs are expected to pay more for their tickets because they can only access expensive seating, they could be being treated less favourably than others and, if so, this would effectively constitute discrimination."
The problem had been raised with the commission before and dealt with through mediation.
Mr Nicholson said he was pleased with the result but it was a problem that arose often in New Zealand.
He had been to several concerts in Europe and it was normal there for promoters to give discounts for disabled concert-goers or allow the support person in free.
"I went to a couple of shows at the West End, where normal ... tickets were 40, and I was able to take myself and my girlfriend for 20 per person."
This is not the first time Mr Nicholson has succeeded in taking concert organisers to task over discriminatory pricing.
In 2008 he persuaded the promoters of Westlife and Eric Clapton concerts to lower a small number of seat prices for disabled patrons.
"I'm not trying to be self-righteous or demanding, it would just be nice to have the same options as everyone else."
Ticketek has been pressured to offer cheaper tickets to wheelchair users at November's U2 and Jay-Z concert after a warning from the Human Rights Commission.
Disability advocate Red Nicholson (pictured) wrote to organisers of the show Sept. 2 after learning that the cheapest wheelchair-accessible seating available was $179 plus booking fee, while general admission tickets started at $39.
He paid $380 for himself and a support person.
Mr Nicholson said that, although he had not been counting on getting a $39 ticket, he had budgeted on buying general admission passes for about $100 each.
"I really wanted to see Jay-Z live, so I had to use a significant amount more of my savings, but I couldn't wait around for some sort of resolution. It's about choice – one group of people, who are arguably on a lower average income, being asked to pony up $180 while everyone else has the opportunity to pay less."
After queries from The Dominion Post, concert organisers agreed to open up an allocated number of seats in the reserved section at a lower price for wheelchair users.
Ticketek has promised to move Mr Nicholson and refund part of his ticket price, and said its original pricing was "not intended to offend or discriminate".
Human Rights Commissioner Judy McGregor said it could be considered discriminatory to force wheelchair users to pay more for tickets.
"If people in wheelchairs are expected to pay more for their tickets because they can only access expensive seating, they could be being treated less favourably than others and, if so, this would effectively constitute discrimination."
The problem had been raised with the commission before and dealt with through mediation.
Mr Nicholson said he was pleased with the result but it was a problem that arose often in New Zealand.
He had been to several concerts in Europe and it was normal there for promoters to give discounts for disabled concert-goers or allow the support person in free.
"I went to a couple of shows at the West End, where normal ... tickets were 40, and I was able to take myself and my girlfriend for 20 per person."
This is not the first time Mr Nicholson has succeeded in taking concert organisers to task over discriminatory pricing.
In 2008 he persuaded the promoters of Westlife and Eric Clapton concerts to lower a small number of seat prices for disabled patrons.
"I'm not trying to be self-righteous or demanding, it would just be nice to have the same options as everyone else."
Employment Gains Seen For People With Disabilities
Unemployment concerns eased slightly for Americans with disabilities in August, receding from near record levels the month prior, the Labor Department said Friday.
Film critic Roger Ebert, no longer able to talk or chew due to cancer, still loves food and has new cookbook to prove it
From The NY Times:
HARBERT, Mich. -- The first several minutes at a restaurant with Roger Ebert (pictured) are awkward.
It’s not that you can’t find a million things to discuss. Mr. Ebert, 68, has reviewed movies for more than four decades. He’s driven around with Robert Mitchum while the actor got stoned and lost on the Pennsylvania Turnpike. He once owned a 1957 Studebaker and still owns a Pulitzer Prize.
The thing is, he doesn’t eat and he doesn’t talk. Or rather, he can’t eat and he can’t talk. He hasn’t for four years, ever since cancer took his lower jaw, and three attempts to rebuild his face and his voice failed.
In those first few moments at the table, you try not to look at the empty place where his jaw used to be. You wonder how it feels to receive your nourishment through a tube directly into your stomach. You cringe when the waitress offers him a menu and asks if he wants something to drink.
But soon, in a flurry of hand gestures, glances, scribbles in a little spiral notebook and patient asides from his wife, Chaz, he’s having a conversation. You’re laughing. And you get to ask the question: How bad do you miss eating?
“For a few days I could think of nothing but root beer,” he said about the weeks after the surgery that removed much of his jaw. He passed through a candy fixation, romancing Red Hots and licorice-flavored Chuckles.
And he circled back time and again to a favorite meal served at Steak ’n Shake, an old-fashioned hamburger chain beloved in his part of the Midwest. When he wrote about it last year on his blog, Roger Ebert’s Journal, people saw that the legendary movie critic for The Chicago Sun-Times could also knock out some great food writing.
“A downstate Illinois boy loves the Steak ’n Shake as a Puerto Rican loves rice and beans, an Egyptian loves falafel, a Brit loves banger and mash, an Indian loves tikki ki chaat, a Swede loves herring, a Finn loves reindeer jerky, and a Canadian loves bran muffins,” he wrote. “These matters do not involve taste. They involve a deep-seated conviction that a food is absolutely right, and always has been, and always will be.”
He both writes and thinks about food in the present tense. Ask about favorite foods and he’ll scribble a note: “I love spicy and Indian.” An offer to bring some New Jersey peaches to his summer home here on the shore of Lake Michigan brings a sharp defense of Michigan peaches and a menu idea. “Maybe for dessert we could have a salad of local fresh fruits.”
“Food for me is in the present tense,” he said. “Eating for me is now only in the past tense.” He says he has a “voluptuous food memory” that gets stronger all the time.
“I can remember the taste and smell of everything, even though I can no longer taste or smell,” he said.
That is, he concedes later, a bit sweeping. He can’t remember the food at a French spa prepared by Michel Guérard, who has three Michelin stars. And he can’t recall the last meal he ever ate, because who knew then that surgeons would never be able to fix it all?
But he remembers everything about the food at the Steak ’n Shake. In the hospital, he told me, he ate Steak ’n Shake meals a bite at a time in his mind. Still, what he longs for most is the talk and fellowship of the table.
“The jokes, gossip, laughs, arguments and shared memories I miss,” he wrote in a blog post.
The eating itself is a side note, really. Anyone who has put together a winning dinner party understands that. But food — the cooking and sharing part of it — still means so much to him that he is publishing a cookbook this month. It’s based entirely on meals to be made in a rice cooker. The title is “The Pot and How to Use It: The Mystery and Romance of the Rice Cooker” (Andrews McMeel Publishing, $14.99).
How can a guy who has no tongue write a recipe?
“It’s all experience, my visuals and friendly tasters,” he wrote to me. “I’ve used The Pot so very many times I know what everything I make in it MUST taste like.”
The first rice cooker in the Ebert household was a wedding gift from the couple’s longtime friend and personal assistant, Carol Iwata. It wasn’t until Mr. Ebert became serious about losing weight and went to the Pritikin Longevity Center & Spa in Florida that he began to tinker with cooking grains other than rice. He went nerdy and deep.
“Whenever Roger learns anything, he becomes obsessed with it,” Mrs. Ebert said.
Soon, entire meals were coming out of the rice cooker. He made fruit and oatmeal breakfasts and stews for supper, figuring out how to mess with the settings and stage the ingredients so that everything didn’t turn to mush.
He took his little three-cupper to Sundance so he could march through a marathon of movies with something more than popcorn and candy in his stomach.
In 2008, long after he accepted that he would never put food in his mouth again, he wrote a blog post presenting his philosophy of The Pot as a way for all the people with not much space and not much time or money to cook for themselves.
“I am thinking of you, student in your dorm room,” he wrote. “You, shut-in. You, recovering campaign worker. You, movie critic at Sundance. You, sex worker waiting for the phone to ring. You, factory worker sick of frozen meals. You, people in Werner Herzog’s documentary about life at the South Pole.”
The post became the frame for the book. “I am a quick, direct, practical and simple cook, which is why the rice cooker had such an appeal to me,” he explained.
“The Pot” follows food obsessions that include a long affair with a wok and with a Madhur Jaffrey dish that involves sealing a chicken in a pot with flour paste. Although Mr. Ebert often doesn’t follow cookbooks, his 150-volume collection includes well-used copies of “Craig Claiborne’s Kitchen Primer,” which taught him to cook, and a later edition of “Cooking in Ten Minutes,” published in 1948 by Édouard de Pomiane.
Most of the recipes came from Mr. Ebert’s head, from friends and from a dedicated group of blog readers who started a sub-cult built around him and rice cookers. They form just one of many tribes who have recently discovered him as a prolific, post-cancer online personality.
He spends hours propped in his reclining chairs at the couple’s homes in Chicago and here in Michigan, tending his blog and his Twitter account, which has nearly a quarter-million followers.
“The blog has opened a new world just when I needed it,” he told me.
Dorothy O’Brien, who edited the book, sent the recipes to professional testers to get the unruly collection into shape. There wasn’t much to do to the copy, though. It was nearly perfect.
The book, she said, is “more about his philosophy of food and eating and why we eat.” It also includes comments from his digital followers, which makes it something of a community cookbook.
“When he says he misses the camaraderie of eating, that’s what he misses more than the food,” she said.
Mr. Ebert wisely recruited Anna Thomas, the author of the classic “The Vegetarian Epicure” and the book “Love Soup,” as his culinary ombudswoman. She decries the limits of The Pot’s two settings — “insanely high and barely warm” — and argued against the inclusion of canned soup and powdered broth in many of the book’s recipes. (She lost.)
But she salutes the spirit of one-pot cooking and contributed recipes with smart ways to coax flavors from The Pot with browned onion and fresh ingredients, like ripe tomatoes in a summer soup with farro.
Health is a sub-theme. Mr. Ebert remains obsessed with grains and sodium levels, lessons he learned when his wife persuaded him to go to the Pritikin Center to lose weight. He dropped about 70 pounds just before he got sick, and another 40 or so during his illness.
The book is funny, too. His list of meats to throw into The Pot includes chicken, pork, goat and Minotaur. In explaining how The Pot knows when the rice is done, he writes: “It is an ancient mystery of the Orient. Don’t ask questions you don’t need the answers to.”
Cooking with Mr. Ebert, who can’t speak but has a very deliberate way in the kitchen, is both a thrill and a challenge. His physical condition limits the time he can spend there, but he makes good use of it, keeping things simple and relying on the Cuisinart to chop ingredients, even for a salad.
Mrs. Ebert, a lawyer who grew up in a big family and is more used to cooking for a crowd, designed the huge kitchen in the lake house, which her husband has owned since the 1980s. It has generous counters and an oversize table that seats a dozen. They have hosted Fourth of July parties with 300 people and Thanksgiving for 30.
Since his operations, the cooking has been on a much smaller scale.
The dish we prepared one day last month didn’t have a name and wasn’t written down anywhere.
Because I had no idea where we were going as we cooked, it rendered the session something like a “Top Chef” challenge. He started by dumping water into The Pot with a store-bought blend of rice, grain and lentils called SooFoo. Then he sent me to chop some Michigan peaches. “Better use ripe peach,” he scribbled when I was slicing one that seemed a bit hard. “I handed to you.”
I had to guess what he meant when he waved off the bowl I selected to hold the yellow peppers I had chopped. Was it the bowl or was the chopping wrong?
At one point, I think he got very frustrated. He wanted to make a nice lunch, but I kept interrupting him with questions. A photographer kept taking pictures. Mrs. Ebert, who has a rare patience, was getting tired.
He scribbled a few hurried instructions for me and left the kitchen. He hadn’t taken any nourishment in a while, and his shoulder, whose muscle had been used in an effort to repair his face, had started to ache.
He eased into the big black recliner in his study, and his wife got out a can of the Isosource that keeps him alive. He takes about six cans four times a day, mixed with water. Sometimes he gets fresh fruit or vegetable juice or a little shot of Pepsi, which helps clean the tube.
While he’s in the chair, I tend to the onions and garlic in one pot and keep stirring the grains, peaches and pork in another. I mix them together, as he instructed. I peek into the study and watch him take his liquid meal, embarrassed by my curiosity.
After about 15 minutes he walks out and scribbles me a note.
“I’m sure you made certain the pork was heated through.”
Yes, chef, I say.
He scribbles again. It’s an apology.
“I come across as a tyrannical chef because I never speak and am in a hurry because of my shoulder.”
No worries, chef, I say. Then I lift the lid from The Pot.
He pours a little spicy Saigon Sizzle sauce from a bottle and stirs it in.
Then he gives me a thumbs up. It’s time to eat.
HARBERT, Mich. -- The first several minutes at a restaurant with Roger Ebert (pictured) are awkward.
It’s not that you can’t find a million things to discuss. Mr. Ebert, 68, has reviewed movies for more than four decades. He’s driven around with Robert Mitchum while the actor got stoned and lost on the Pennsylvania Turnpike. He once owned a 1957 Studebaker and still owns a Pulitzer Prize.
The thing is, he doesn’t eat and he doesn’t talk. Or rather, he can’t eat and he can’t talk. He hasn’t for four years, ever since cancer took his lower jaw, and three attempts to rebuild his face and his voice failed.
In those first few moments at the table, you try not to look at the empty place where his jaw used to be. You wonder how it feels to receive your nourishment through a tube directly into your stomach. You cringe when the waitress offers him a menu and asks if he wants something to drink.
But soon, in a flurry of hand gestures, glances, scribbles in a little spiral notebook and patient asides from his wife, Chaz, he’s having a conversation. You’re laughing. And you get to ask the question: How bad do you miss eating?
“For a few days I could think of nothing but root beer,” he said about the weeks after the surgery that removed much of his jaw. He passed through a candy fixation, romancing Red Hots and licorice-flavored Chuckles.
And he circled back time and again to a favorite meal served at Steak ’n Shake, an old-fashioned hamburger chain beloved in his part of the Midwest. When he wrote about it last year on his blog, Roger Ebert’s Journal, people saw that the legendary movie critic for The Chicago Sun-Times could also knock out some great food writing.
“A downstate Illinois boy loves the Steak ’n Shake as a Puerto Rican loves rice and beans, an Egyptian loves falafel, a Brit loves banger and mash, an Indian loves tikki ki chaat, a Swede loves herring, a Finn loves reindeer jerky, and a Canadian loves bran muffins,” he wrote. “These matters do not involve taste. They involve a deep-seated conviction that a food is absolutely right, and always has been, and always will be.”
He both writes and thinks about food in the present tense. Ask about favorite foods and he’ll scribble a note: “I love spicy and Indian.” An offer to bring some New Jersey peaches to his summer home here on the shore of Lake Michigan brings a sharp defense of Michigan peaches and a menu idea. “Maybe for dessert we could have a salad of local fresh fruits.”
“Food for me is in the present tense,” he said. “Eating for me is now only in the past tense.” He says he has a “voluptuous food memory” that gets stronger all the time.
“I can remember the taste and smell of everything, even though I can no longer taste or smell,” he said.
That is, he concedes later, a bit sweeping. He can’t remember the food at a French spa prepared by Michel Guérard, who has three Michelin stars. And he can’t recall the last meal he ever ate, because who knew then that surgeons would never be able to fix it all?
But he remembers everything about the food at the Steak ’n Shake. In the hospital, he told me, he ate Steak ’n Shake meals a bite at a time in his mind. Still, what he longs for most is the talk and fellowship of the table.
“The jokes, gossip, laughs, arguments and shared memories I miss,” he wrote in a blog post.
The eating itself is a side note, really. Anyone who has put together a winning dinner party understands that. But food — the cooking and sharing part of it — still means so much to him that he is publishing a cookbook this month. It’s based entirely on meals to be made in a rice cooker. The title is “The Pot and How to Use It: The Mystery and Romance of the Rice Cooker” (Andrews McMeel Publishing, $14.99).
How can a guy who has no tongue write a recipe?
“It’s all experience, my visuals and friendly tasters,” he wrote to me. “I’ve used The Pot so very many times I know what everything I make in it MUST taste like.”
The first rice cooker in the Ebert household was a wedding gift from the couple’s longtime friend and personal assistant, Carol Iwata. It wasn’t until Mr. Ebert became serious about losing weight and went to the Pritikin Longevity Center & Spa in Florida that he began to tinker with cooking grains other than rice. He went nerdy and deep.
“Whenever Roger learns anything, he becomes obsessed with it,” Mrs. Ebert said.
Soon, entire meals were coming out of the rice cooker. He made fruit and oatmeal breakfasts and stews for supper, figuring out how to mess with the settings and stage the ingredients so that everything didn’t turn to mush.
He took his little three-cupper to Sundance so he could march through a marathon of movies with something more than popcorn and candy in his stomach.
In 2008, long after he accepted that he would never put food in his mouth again, he wrote a blog post presenting his philosophy of The Pot as a way for all the people with not much space and not much time or money to cook for themselves.
“I am thinking of you, student in your dorm room,” he wrote. “You, shut-in. You, recovering campaign worker. You, movie critic at Sundance. You, sex worker waiting for the phone to ring. You, factory worker sick of frozen meals. You, people in Werner Herzog’s documentary about life at the South Pole.”
The post became the frame for the book. “I am a quick, direct, practical and simple cook, which is why the rice cooker had such an appeal to me,” he explained.
“The Pot” follows food obsessions that include a long affair with a wok and with a Madhur Jaffrey dish that involves sealing a chicken in a pot with flour paste. Although Mr. Ebert often doesn’t follow cookbooks, his 150-volume collection includes well-used copies of “Craig Claiborne’s Kitchen Primer,” which taught him to cook, and a later edition of “Cooking in Ten Minutes,” published in 1948 by Édouard de Pomiane.
Most of the recipes came from Mr. Ebert’s head, from friends and from a dedicated group of blog readers who started a sub-cult built around him and rice cookers. They form just one of many tribes who have recently discovered him as a prolific, post-cancer online personality.
He spends hours propped in his reclining chairs at the couple’s homes in Chicago and here in Michigan, tending his blog and his Twitter account, which has nearly a quarter-million followers.
“The blog has opened a new world just when I needed it,” he told me.
Dorothy O’Brien, who edited the book, sent the recipes to professional testers to get the unruly collection into shape. There wasn’t much to do to the copy, though. It was nearly perfect.
The book, she said, is “more about his philosophy of food and eating and why we eat.” It also includes comments from his digital followers, which makes it something of a community cookbook.
“When he says he misses the camaraderie of eating, that’s what he misses more than the food,” she said.
Mr. Ebert wisely recruited Anna Thomas, the author of the classic “The Vegetarian Epicure” and the book “Love Soup,” as his culinary ombudswoman. She decries the limits of The Pot’s two settings — “insanely high and barely warm” — and argued against the inclusion of canned soup and powdered broth in many of the book’s recipes. (She lost.)
But she salutes the spirit of one-pot cooking and contributed recipes with smart ways to coax flavors from The Pot with browned onion and fresh ingredients, like ripe tomatoes in a summer soup with farro.
Health is a sub-theme. Mr. Ebert remains obsessed with grains and sodium levels, lessons he learned when his wife persuaded him to go to the Pritikin Center to lose weight. He dropped about 70 pounds just before he got sick, and another 40 or so during his illness.
The book is funny, too. His list of meats to throw into The Pot includes chicken, pork, goat and Minotaur. In explaining how The Pot knows when the rice is done, he writes: “It is an ancient mystery of the Orient. Don’t ask questions you don’t need the answers to.”
Cooking with Mr. Ebert, who can’t speak but has a very deliberate way in the kitchen, is both a thrill and a challenge. His physical condition limits the time he can spend there, but he makes good use of it, keeping things simple and relying on the Cuisinart to chop ingredients, even for a salad.
Mrs. Ebert, a lawyer who grew up in a big family and is more used to cooking for a crowd, designed the huge kitchen in the lake house, which her husband has owned since the 1980s. It has generous counters and an oversize table that seats a dozen. They have hosted Fourth of July parties with 300 people and Thanksgiving for 30.
Since his operations, the cooking has been on a much smaller scale.
The dish we prepared one day last month didn’t have a name and wasn’t written down anywhere.
Because I had no idea where we were going as we cooked, it rendered the session something like a “Top Chef” challenge. He started by dumping water into The Pot with a store-bought blend of rice, grain and lentils called SooFoo. Then he sent me to chop some Michigan peaches. “Better use ripe peach,” he scribbled when I was slicing one that seemed a bit hard. “I handed to you.”
I had to guess what he meant when he waved off the bowl I selected to hold the yellow peppers I had chopped. Was it the bowl or was the chopping wrong?
At one point, I think he got very frustrated. He wanted to make a nice lunch, but I kept interrupting him with questions. A photographer kept taking pictures. Mrs. Ebert, who has a rare patience, was getting tired.
He scribbled a few hurried instructions for me and left the kitchen. He hadn’t taken any nourishment in a while, and his shoulder, whose muscle had been used in an effort to repair his face, had started to ache.
He eased into the big black recliner in his study, and his wife got out a can of the Isosource that keeps him alive. He takes about six cans four times a day, mixed with water. Sometimes he gets fresh fruit or vegetable juice or a little shot of Pepsi, which helps clean the tube.
While he’s in the chair, I tend to the onions and garlic in one pot and keep stirring the grains, peaches and pork in another. I mix them together, as he instructed. I peek into the study and watch him take his liquid meal, embarrassed by my curiosity.
After about 15 minutes he walks out and scribbles me a note.
“I’m sure you made certain the pork was heated through.”
Yes, chef, I say.
He scribbles again. It’s an apology.
“I come across as a tyrannical chef because I never speak and am in a hurry because of my shoulder.”
No worries, chef, I say. Then I lift the lid from The Pot.
He pours a little spicy Saigon Sizzle sauce from a bottle and stirs it in.
Then he gives me a thumbs up. It’s time to eat.
China to hear first HIV job discrimination lawsuit
From The NY Times:
BEIJING — In what appears to be a first for China’s legal system, a court in Anhui Province has agreed to hear a complaint by a prospective schoolteacher that he was illegally denied a job because he is H.I.V. positive, the man’s lawyer said Tuesday.
The unidentified man, said to be in his early 20s, brought the case under a 2006 national regulation that prohibits job discrimination against people with H.I.V., his lawyer, Zheng Jineng, said in a telephone interview from Hefei, the provincial capital.
Mr. Zheng said the case would be heard by a district court in Anqing. The plaintiff contends that he passed a written test and interviews for a teaching job there, but that the city education bureau rejected him after a physical examination showed he was infected with H.I.V., the virus that causes AIDS.
“In the past on sensitive cases like this, the court would be very reluctant to accept the case,” Mr. Zheng said. “But this time they accepted it smoothly and quickly. That means the legal system in China is making progress.”
H.I.V.-positive Chinese suffered official and public discrimination for years after the disease first surfaced in the country in 1986. Infected students were often forced to leave school and workers were shunted from their jobs.
More recently, the national government has taken a tolerant approach, offering free antiretroviral drugs and prenatal care to many people who are H.I.V. positive, as well as screening for those who suspect that they might be. Many migrants remain unable to receive the services, however, because they lack the appropriate residence papers.
The National People’s Congress, China’s legislature, has approved a law that bans employers from discriminating against job applicants with certain kinds of communicable diseases, as chosen by state regulators. But the basis for the Anhui lawsuit is a regulation issued in March 2006 by the State Council, the government’s senior management body, which states that “no institution or individual shall discriminate against people living with H.I.V., AIDS patients and their relatives.”
More than four years later, no court had placed an H.I.V. discrimination case on its docket until Monday’s decision, said Yu Fangqiang, the chief coordinator for Yirenping, a Beijing-based civil-rights advocacy group involved in the Anhui case. The group paid the court fee to file the lawsuit, and Mr. Zheng waived his legal fees for the case.
Mr. Yu said he agreed with Mr. Zheng that the court’s acceptance of the discrimination lawsuit was a sign of changing legal standards. But he added that news media coverage had probably played a crucial role in the court’s decision, which had been delayed until the Chinese journal Legal Daily ran an article about the case.
The newspaper, he said, “is a must-read for a lot of people in the legal system. I think the media played a role in the court accepting this case.”
Yirenping, the rights group, had filed as many as 15 other lawsuits similar to the Anhui complaint in the past, Mr. Yu said, but courts uniformly rejected them. Many other H.I.V.-positive citizens approached the organization for advice on suing, but later dropped the idea for fear that their confidentiality would be compromised, he said.
But the Anhui plaintiff, he said, was determined to pursue a lawsuit.
“He was born to a poor family in the countryside,” Mr. Yu said, “and a job as a teacher means a lot to him — stable pay and a decent job.”
BEIJING — In what appears to be a first for China’s legal system, a court in Anhui Province has agreed to hear a complaint by a prospective schoolteacher that he was illegally denied a job because he is H.I.V. positive, the man’s lawyer said Tuesday.
The unidentified man, said to be in his early 20s, brought the case under a 2006 national regulation that prohibits job discrimination against people with H.I.V., his lawyer, Zheng Jineng, said in a telephone interview from Hefei, the provincial capital.
Mr. Zheng said the case would be heard by a district court in Anqing. The plaintiff contends that he passed a written test and interviews for a teaching job there, but that the city education bureau rejected him after a physical examination showed he was infected with H.I.V., the virus that causes AIDS.
“In the past on sensitive cases like this, the court would be very reluctant to accept the case,” Mr. Zheng said. “But this time they accepted it smoothly and quickly. That means the legal system in China is making progress.”
H.I.V.-positive Chinese suffered official and public discrimination for years after the disease first surfaced in the country in 1986. Infected students were often forced to leave school and workers were shunted from their jobs.
More recently, the national government has taken a tolerant approach, offering free antiretroviral drugs and prenatal care to many people who are H.I.V. positive, as well as screening for those who suspect that they might be. Many migrants remain unable to receive the services, however, because they lack the appropriate residence papers.
The National People’s Congress, China’s legislature, has approved a law that bans employers from discriminating against job applicants with certain kinds of communicable diseases, as chosen by state regulators. But the basis for the Anhui lawsuit is a regulation issued in March 2006 by the State Council, the government’s senior management body, which states that “no institution or individual shall discriminate against people living with H.I.V., AIDS patients and their relatives.”
More than four years later, no court had placed an H.I.V. discrimination case on its docket until Monday’s decision, said Yu Fangqiang, the chief coordinator for Yirenping, a Beijing-based civil-rights advocacy group involved in the Anhui case. The group paid the court fee to file the lawsuit, and Mr. Zheng waived his legal fees for the case.
Mr. Yu said he agreed with Mr. Zheng that the court’s acceptance of the discrimination lawsuit was a sign of changing legal standards. But he added that news media coverage had probably played a crucial role in the court’s decision, which had been delayed until the Chinese journal Legal Daily ran an article about the case.
The newspaper, he said, “is a must-read for a lot of people in the legal system. I think the media played a role in the court accepting this case.”
Yirenping, the rights group, had filed as many as 15 other lawsuits similar to the Anhui complaint in the past, Mr. Yu said, but courts uniformly rejected them. Many other H.I.V.-positive citizens approached the organization for advice on suing, but later dropped the idea for fear that their confidentiality would be compromised, he said.
But the Anhui plaintiff, he said, was determined to pursue a lawsuit.
“He was born to a poor family in the countryside,” Mr. Yu said, “and a job as a teacher means a lot to him — stable pay and a decent job.”
Quebec wheelchair user wants to launch class action lawsuit against Via Rail Canada for discrimination, inaccessible passenger cars
From QMI:
QUEBEC CITY, Canada - A Quebec woman wants to launch a multi-million dollar class action lawsuit against Via Rail Canada for what she alleges are "discriminatory and abusive practices" against wheelchair-bound customers.
In a complaint filed in a Montreal courthouse August 31, Gaetane Cummings claims she wants to represent all disabled Canadians who have been affected by what she calls "inaccessible" Via Rail passenger cars.
She maintains she felt cheated by the Crown corporation on a September 2009 trip she took between Montreal and Vancouver.
The 53-year-old multiple sclerosis sufferer was travelling on a $1,666 first-class ticket she purchased after being told by a Via Rail employee her cabin would be adapted to meet her needs.
The rail company assured Cummings she would be able to move freely from one car to another and would be have full access the restaurant and bar areas.
But when Cummings switched cars in Toronto, she ran into trouble.
"An hour before the departure from Toronto to Vancouver, an employee told the appellant she had to stay in the same wagon and couldn’t move from one to the other like the other passengers, and would not have access to the showers, restaurant car, the bar or the observation car,’’ her lawyer Jean Yanakis said.
Cummings said she was forced to continue her journey confined to her cabin and her husband had to carry her to the bathroom.
She said she felt "excluded, embarrassed, saddened and weakened’’ by the situation.
According to the Via Rail website, all trains are accessible to wheelchair-bound travellers.
"However, the availability of said services vary according to the train equipment in use,’’ the site notes.
Elizabeth Huart, a spokeswoman for Via Rail, said the company offered Cummings a full refund last October.
"In the case of Ms. Cummings, we are very sorry for the experience she had on board,’’ she said.
Huart added the rail company was investing $7-million to improve mobility on their trains.
Via Rail has previously come under fire for inaccessible passenger rail cars. In a 2007 decision, the Supreme Court of Canada forced the rail company to improve access for passengers with limited mobility.
Cummings is claiming the cost of her ticket, along with $30,000 in compensation for herself other disabled passengers.
QUEBEC CITY, Canada - A Quebec woman wants to launch a multi-million dollar class action lawsuit against Via Rail Canada for what she alleges are "discriminatory and abusive practices" against wheelchair-bound customers.
In a complaint filed in a Montreal courthouse August 31, Gaetane Cummings claims she wants to represent all disabled Canadians who have been affected by what she calls "inaccessible" Via Rail passenger cars.
She maintains she felt cheated by the Crown corporation on a September 2009 trip she took between Montreal and Vancouver.
The 53-year-old multiple sclerosis sufferer was travelling on a $1,666 first-class ticket she purchased after being told by a Via Rail employee her cabin would be adapted to meet her needs.
The rail company assured Cummings she would be able to move freely from one car to another and would be have full access the restaurant and bar areas.
But when Cummings switched cars in Toronto, she ran into trouble.
"An hour before the departure from Toronto to Vancouver, an employee told the appellant she had to stay in the same wagon and couldn’t move from one to the other like the other passengers, and would not have access to the showers, restaurant car, the bar or the observation car,’’ her lawyer Jean Yanakis said.
Cummings said she was forced to continue her journey confined to her cabin and her husband had to carry her to the bathroom.
She said she felt "excluded, embarrassed, saddened and weakened’’ by the situation.
According to the Via Rail website, all trains are accessible to wheelchair-bound travellers.
"However, the availability of said services vary according to the train equipment in use,’’ the site notes.
Elizabeth Huart, a spokeswoman for Via Rail, said the company offered Cummings a full refund last October.
"In the case of Ms. Cummings, we are very sorry for the experience she had on board,’’ she said.
Huart added the rail company was investing $7-million to improve mobility on their trains.
Via Rail has previously come under fire for inaccessible passenger rail cars. In a 2007 decision, the Supreme Court of Canada forced the rail company to improve access for passengers with limited mobility.
Cummings is claiming the cost of her ticket, along with $30,000 in compensation for herself other disabled passengers.
Ukrainian national team wins Cerebral Palsy European Soccer Championships
From The Day in Kiev, Ukraine:
The Ukrainian national team has won the Cerebral Palsy European Soccer Championships and will thus vie in the 14th Summer Paralympics scheduled for 2012 in London, reports the press service of the National Paralympic Committee of Ukraine.
The Ukrainian national team met August 28 with its traditional Russian adversary and beat it 9:8 (with the traditional penalty kicks), winning the European Paralympic title. None of the organizers had expected this final match to last so long.
In the first half the Russian team scored only minutes before the referee’s whistle, the Ukrainians got even in the second half: 1:1, then two additional 10-minute halves didn’t change the score. Finally, penalty kicks (eight on the Ukrainian and seven on the Russian side) named the European champion.
The open Cerebral Palsy European Soccer Championships, held in Glasgow, Scotland, involved nine European Paralympic national teams from Scotland, Russia, the Netherlands, Spain, Denmark, Ireland, Ukraine, England, and the one from Australia.
Traditionally, the Russian, Ukrainian, Dutch, and Irish teams were the favorites. Most teams had new players, totaling 67.
The Ukrainian national team has won the Cerebral Palsy European Soccer Championships and will thus vie in the 14th Summer Paralympics scheduled for 2012 in London, reports the press service of the National Paralympic Committee of Ukraine.
The Ukrainian national team met August 28 with its traditional Russian adversary and beat it 9:8 (with the traditional penalty kicks), winning the European Paralympic title. None of the organizers had expected this final match to last so long.
In the first half the Russian team scored only minutes before the referee’s whistle, the Ukrainians got even in the second half: 1:1, then two additional 10-minute halves didn’t change the score. Finally, penalty kicks (eight on the Ukrainian and seven on the Russian side) named the European champion.
The open Cerebral Palsy European Soccer Championships, held in Glasgow, Scotland, involved nine European Paralympic national teams from Scotland, Russia, the Netherlands, Spain, Denmark, Ireland, Ukraine, England, and the one from Australia.
Traditionally, the Russian, Ukrainian, Dutch, and Irish teams were the favorites. Most teams had new players, totaling 67.
Scottish deafness organization pioneering Sign on Screen initiative
From The Herald in Scotland:
Phoning a bank, visiting the doctor, ordering a pizza, or dealing with tradesmen – these are the tasks which most of us take for granted, but for deaf people they can be a mountainous challenge.
In the past, deaf people who needed to communicate over the phone had two choices – hire a sign language interpreter, or use a system commonly known as Typetalk.
The former is expensive, and can be slow to arrange. The latter enables a caller to communicate with hearing people remotely, by typing their message and having it read out by a hearing person – but is slow and far from user-friendly.
Neither method copes well with modern telephone handling systems which require users to select promptly from a menu of options.
Now Scottish charity Deaf Connections is pioneering a new approach, Sign On Screen, which it believes will revolutionise communication for more than 50,000 deaf and hard of hearing people from across the UK. The Glasgow-based organisation has commissioned specialist designers to develop an alternative which uses video and laptop technology to allow deaf people to communicate with the hearing in real time.
It uses similar technology to the popular online telephone service Skype, to connect users to a British Sign Language (BSL) interpreter from their laptop or computer.
The interpreter, sitting in a video call centre, can speak to the hearing person involved in the call and translate back into BSL as needed. It sounds simple but Deaf Connections argue it will revolutionise the lives of many users.
At present, booking a BSL interpreter involves a wait of up to two weeks, and is expensive as they must usually be booked for a minimum of an hour, for what could be a five-minute conversation. Many deaf people resort to using friends and family to translate, losing out on independence and privacy as a result.
Scott Campbell (pictured) became deaf at the age of three. Now 39, he is piloting the Sign On Screen service, which is officially launched this week. Until he began testing the system a year ago, he relied on Text Direct messaging – the more recent name for Typetalk.
Mr Campbell said: “Hearing people take it for granted that they can express a thought immediately every time they speak, but unless I’m communicating with another BSL user, there’s always a delay while I wait for a translator to help me be understood.
“Typetalk has been very useful over the years but it can make those delays in conversation very long, especially when you’re trying to express something which requires a lot of back-and-forth between each side.”
“There’s another element of difficulty in that my first language is BSL, but Typetalk requires me to type in English, so it is almost equivalent to a hearing person having to conduct all their telephone conversations in a second language they’re not entirely comfortable speaking.
“Sign On Screen removes a lot of those barriers and makes conversation much more immediate. I recently used it to have a complicated conversation with a car park company which just wouldn’t have been possible using Typetalk.”
He now even uses the system to talk to family and friends. He said: “I often check in with my mum in Troon using Sign On Screen. I think she appreciates that our conversations flow more easily without the delays of Typetalk.” Mr Campbell, who has just completed an HND in photography, says the system is a significant advance. “It has the potential to revolutionise the way deaf people communicate with the hearing world.”
Gordon Chapman, CEO of Deaf Connections, hopes it will do just that: “With interpreters in such short supply, deaf people often try to manage without and frequently end up not getting what they want or need – sometimes with disastrous consequences to their health, finances or quality of life,” he said.
Interpreters sit in the Deaf Connections call centre (in private rooms – all conversations are confidential) and can help around 20 clients instead of taking two or three bookings a day.
While cheaper than booking individual interpreters, the system currently costs individuals and organisations upwards of 75p a minute, and Deaf Connections is lobbying for a new approach.
Mr Chapman said: “We think it should be free for deaf people – it is in other countries. In America, every hearing person is charged a few cents which goes into a federal pot to provide services like ours.
“We’ve been lobbying the Scottish Government and others to provide this, and we are trying to get public bodies including health boards, local authorities and job centres to pick up the cost when dealing with their clients. I think we are slowly winning the argument.”
Mr Chapman says there has been a lot of interest in the system from other agencies, including the police, to help them communicate with deaf or hard of hearing people who have been arrested, or who wish to report a crime.
Meanwhile Deaf Connections is working with partner charities in England and Wales with a view to providing similar interpreter teams in Liverpool, London and Birmingham, and offering 24/7 cover.
Ultimately the hope is that advances with video calls from mobile phones will allow every deaf person effectively to carry their own interpreter in their pocket.
Phoning a bank, visiting the doctor, ordering a pizza, or dealing with tradesmen – these are the tasks which most of us take for granted, but for deaf people they can be a mountainous challenge.
In the past, deaf people who needed to communicate over the phone had two choices – hire a sign language interpreter, or use a system commonly known as Typetalk.
The former is expensive, and can be slow to arrange. The latter enables a caller to communicate with hearing people remotely, by typing their message and having it read out by a hearing person – but is slow and far from user-friendly.
Neither method copes well with modern telephone handling systems which require users to select promptly from a menu of options.
Now Scottish charity Deaf Connections is pioneering a new approach, Sign On Screen, which it believes will revolutionise communication for more than 50,000 deaf and hard of hearing people from across the UK. The Glasgow-based organisation has commissioned specialist designers to develop an alternative which uses video and laptop technology to allow deaf people to communicate with the hearing in real time.
It uses similar technology to the popular online telephone service Skype, to connect users to a British Sign Language (BSL) interpreter from their laptop or computer.
The interpreter, sitting in a video call centre, can speak to the hearing person involved in the call and translate back into BSL as needed. It sounds simple but Deaf Connections argue it will revolutionise the lives of many users.
At present, booking a BSL interpreter involves a wait of up to two weeks, and is expensive as they must usually be booked for a minimum of an hour, for what could be a five-minute conversation. Many deaf people resort to using friends and family to translate, losing out on independence and privacy as a result.
Scott Campbell (pictured) became deaf at the age of three. Now 39, he is piloting the Sign On Screen service, which is officially launched this week. Until he began testing the system a year ago, he relied on Text Direct messaging – the more recent name for Typetalk.
Mr Campbell said: “Hearing people take it for granted that they can express a thought immediately every time they speak, but unless I’m communicating with another BSL user, there’s always a delay while I wait for a translator to help me be understood.
“Typetalk has been very useful over the years but it can make those delays in conversation very long, especially when you’re trying to express something which requires a lot of back-and-forth between each side.”
“There’s another element of difficulty in that my first language is BSL, but Typetalk requires me to type in English, so it is almost equivalent to a hearing person having to conduct all their telephone conversations in a second language they’re not entirely comfortable speaking.
“Sign On Screen removes a lot of those barriers and makes conversation much more immediate. I recently used it to have a complicated conversation with a car park company which just wouldn’t have been possible using Typetalk.”
He now even uses the system to talk to family and friends. He said: “I often check in with my mum in Troon using Sign On Screen. I think she appreciates that our conversations flow more easily without the delays of Typetalk.” Mr Campbell, who has just completed an HND in photography, says the system is a significant advance. “It has the potential to revolutionise the way deaf people communicate with the hearing world.”
Gordon Chapman, CEO of Deaf Connections, hopes it will do just that: “With interpreters in such short supply, deaf people often try to manage without and frequently end up not getting what they want or need – sometimes with disastrous consequences to their health, finances or quality of life,” he said.
Interpreters sit in the Deaf Connections call centre (in private rooms – all conversations are confidential) and can help around 20 clients instead of taking two or three bookings a day.
While cheaper than booking individual interpreters, the system currently costs individuals and organisations upwards of 75p a minute, and Deaf Connections is lobbying for a new approach.
Mr Chapman said: “We think it should be free for deaf people – it is in other countries. In America, every hearing person is charged a few cents which goes into a federal pot to provide services like ours.
“We’ve been lobbying the Scottish Government and others to provide this, and we are trying to get public bodies including health boards, local authorities and job centres to pick up the cost when dealing with their clients. I think we are slowly winning the argument.”
Mr Chapman says there has been a lot of interest in the system from other agencies, including the police, to help them communicate with deaf or hard of hearing people who have been arrested, or who wish to report a crime.
Meanwhile Deaf Connections is working with partner charities in England and Wales with a view to providing similar interpreter teams in Liverpool, London and Birmingham, and offering 24/7 cover.
Ultimately the hope is that advances with video calls from mobile phones will allow every deaf person effectively to carry their own interpreter in their pocket.
"Handicap This!" to be performed at Illinois community college
From the "Handicap This!" Facebook page. Handicap This! will be performed Friday Sept 10th, 2010 8 p.m., Saturday Sept 11th, 2010 8 p.m., and Sunday Sept 12th, 2010 2 p.m. at Oakton Community College, 1600 E Golf Rd, Des Plaines, IL, MAIN STAGE. You can see its YouTube videos here.
Our mission is to further the cause of the Keep On Keeping On Foundation with educational and entertaining performance art that raises awareness about people born with severe physical handicaps and inspires individuals to achieve their own goals and dreams.
This show is not for the timid. It will stir your senses, challenge your thinking, and wake up your attitude. This is a provocative look at friendship, breaking down barriers, and living with disabilities.
CREATIVE INSPIRATION: Mike Berkson (pictured)
ARTISTIC DIRECTOR: Molly Mulcrone
MANAGING DIRECTOR: Tim Wambach
COMPANY MEMBERS: Denis Berkson, John Frisco, Vanessa Passini, Chris Bachmann, Tony Churchill, Elizabeth Antonucci, Kate Tillotson (pictured), Phil Hasso, Stephanie Murphy, Derek Werner
Our mission is to further the cause of the Keep On Keeping On Foundation with educational and entertaining performance art that raises awareness about people born with severe physical handicaps and inspires individuals to achieve their own goals and dreams.
This show is not for the timid. It will stir your senses, challenge your thinking, and wake up your attitude. This is a provocative look at friendship, breaking down barriers, and living with disabilities.
CREATIVE INSPIRATION: Mike Berkson (pictured)
ARTISTIC DIRECTOR: Molly Mulcrone
MANAGING DIRECTOR: Tim Wambach
COMPANY MEMBERS: Denis Berkson, John Frisco, Vanessa Passini, Chris Bachmann, Tony Churchill, Elizabeth Antonucci, Kate Tillotson (pictured), Phil Hasso, Stephanie Murphy, Derek Werner
Canadian family says police knew of man's mental illness before they fatally shot him
From The Toronto Star:
Reyal Jardine-Douglas’s family called police to get him help.
Later on, after a confrontation with officers, he was dead.
The family of the 25-year-old Pickering man fatally shot by police on Sunday says he suffered from mental illness, including paranoia, and that they had called police to get him admitted to hospital.
In a statement released Tuesday through their lawyer, Jardine-Douglas’s family said they phoned 911 early Sunday afternoon from Lawrence Ave. E. and Victoria Park Ave. to get him help. “He was not exhibiting any violent behaviours at the time,” the statement noted.
The family told 911 that Jardine-Douglas had boarded a southbound Victoria Park bus, informing the dispatcher of his mental state “on more than one occasion.” The family’s lawyer, Glenn Stuart, said they believed that message had been communicated to the attending officers.
Jardine-Douglas was shot by an officer after he fled from the bus when it was pulled over by police at about 3:10 p.m.
Witnesses said police cruisers boxed in the bus and a man bolted through the rear as officers boarded through the front door. According to one witness, three shots were fired in a confrontation.
A knife was recovered at the scene.
The revelation has reignited criticism of the police three weeks before a coroner’s inquest opens into a similar police shooting two years ago.
On Feb. 16, 2008, 28-year-old Byron Debassige, who had schizophrenia, was shot dead by police in Oriole Park after he stole lemons from a local grocery store armed with a 10-centimetre knife.
Officers were cleared of wrongdoing by the Special Investigations Unit, which said Debassige “advanced” toward them and ignored repeated commands to drop the knife. But Debassige’s family and Aboriginal Legal Services of Toronto say the officers needlessly escalated the situation.
The incident paralleled a June 2004 case, when police shot O’Brien Christopher-Reid, 26, who suffered paranoid delusions, after he refused to drop a knife when confronted in Edwards Gardens. An inquest cleared officers of wrongdoing, but recommended police receive further training on dealing with the mentally ill and de-escalation techniques.
“It’s an ongoing problem,” said lawyer Marshall Swadron, chair of Toronto’s Mental Health Legal Committee. “There’s always an inquest pending or a shooting happening.”
In 1997, Toronto police fatally shot Edmund Yu, a 35-year-old man with schizophrenia who was wielding a hammer on a Spadina Ave. bus.
A subsequent coroner’s inquest probed the police department’s approach to dealing with mental illness and led to improved officer training, the creation of a mobile task force and the reinstatement of its crisis resolution course.
That inquest came less than five years after an inquest made similar recommendations to improve training following the 1988 police shooting death of Lester Donaldson, who also suffered from schizophrenia.
“I’m worried that the investment in training is not changing police attitudes,” Swadron said. “The question is how to de-escalate these kinds of situations instead of causing these kinds of disastrous consequences, which seem almost regular.”
Spurred by the rash of police shooting deaths of people with mental illness in the ’80s and ’90s, Toronto officers now undergo mandatory training at the Ontario Police College to learn how to deal with such calls. But Swadron remains unconvinced it has helped.
“We obviously have some more lessons to learn.”
Reyal Jardine-Douglas’s family called police to get him help.
Later on, after a confrontation with officers, he was dead.
The family of the 25-year-old Pickering man fatally shot by police on Sunday says he suffered from mental illness, including paranoia, and that they had called police to get him admitted to hospital.
In a statement released Tuesday through their lawyer, Jardine-Douglas’s family said they phoned 911 early Sunday afternoon from Lawrence Ave. E. and Victoria Park Ave. to get him help. “He was not exhibiting any violent behaviours at the time,” the statement noted.
The family told 911 that Jardine-Douglas had boarded a southbound Victoria Park bus, informing the dispatcher of his mental state “on more than one occasion.” The family’s lawyer, Glenn Stuart, said they believed that message had been communicated to the attending officers.
Jardine-Douglas was shot by an officer after he fled from the bus when it was pulled over by police at about 3:10 p.m.
Witnesses said police cruisers boxed in the bus and a man bolted through the rear as officers boarded through the front door. According to one witness, three shots were fired in a confrontation.
A knife was recovered at the scene.
The revelation has reignited criticism of the police three weeks before a coroner’s inquest opens into a similar police shooting two years ago.
On Feb. 16, 2008, 28-year-old Byron Debassige, who had schizophrenia, was shot dead by police in Oriole Park after he stole lemons from a local grocery store armed with a 10-centimetre knife.
Officers were cleared of wrongdoing by the Special Investigations Unit, which said Debassige “advanced” toward them and ignored repeated commands to drop the knife. But Debassige’s family and Aboriginal Legal Services of Toronto say the officers needlessly escalated the situation.
The incident paralleled a June 2004 case, when police shot O’Brien Christopher-Reid, 26, who suffered paranoid delusions, after he refused to drop a knife when confronted in Edwards Gardens. An inquest cleared officers of wrongdoing, but recommended police receive further training on dealing with the mentally ill and de-escalation techniques.
“It’s an ongoing problem,” said lawyer Marshall Swadron, chair of Toronto’s Mental Health Legal Committee. “There’s always an inquest pending or a shooting happening.”
In 1997, Toronto police fatally shot Edmund Yu, a 35-year-old man with schizophrenia who was wielding a hammer on a Spadina Ave. bus.
A subsequent coroner’s inquest probed the police department’s approach to dealing with mental illness and led to improved officer training, the creation of a mobile task force and the reinstatement of its crisis resolution course.
That inquest came less than five years after an inquest made similar recommendations to improve training following the 1988 police shooting death of Lester Donaldson, who also suffered from schizophrenia.
“I’m worried that the investment in training is not changing police attitudes,” Swadron said. “The question is how to de-escalate these kinds of situations instead of causing these kinds of disastrous consequences, which seem almost regular.”
Spurred by the rash of police shooting deaths of people with mental illness in the ’80s and ’90s, Toronto officers now undergo mandatory training at the Ontario Police College to learn how to deal with such calls. But Swadron remains unconvinced it has helped.
“We obviously have some more lessons to learn.”
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