On Monday 19 March, James Craig returned to his Montreal home, to find his fourteen year-old daughter, Chelsea, unconscious. Despite rushing to call emergency services, Chelsea was dead by the time paramedics reached her.
Chelsea had physical and intellectual impairments.
The following day, Montreal police charged Chelsea's mother-Rachel-with her murder, after alleging that she had given her daughter a lethal cocktail of medicines. Rachel Craig is herself thought to have taken the cocktail, in an unsuccessful suicide attempt, and is still detained in hospital for observation.
Emotive media reports seem set to re-ignite the controversy flowing from the murder of Tracy Latimer and the eventual imprisonment of her father, who some campaigners are still trying to free.
As media reports concerning Chelsea's murder are inconsistent, we regret that we are unable to provide any further information at this time. However, the Euthanasia Prevention Coalition have published a reaction to Chelsea's death which is reproduced below.
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The Euthanasia Prevention Coalition is shocked and saddened by the death of Chelsea Craig, a fourteen year old young woman with Rett Syndrome. Chelsea's death reinforces the reality that people with disabilities in Canada are particularly vulnerable and need proper care and protection.
"The case of Chelsea Craig renews our call for the Federal and Provincial governments to re-examine the level of care that is provided for the disabled, elderly, chronically ill, and all other vulnerable people who are highly dependant on others for their basic care," stated Dr. Barrie deVeber, Euthanasia Prevention Coalition President.
The Coalition's Executive Director, Alex Schadenberg said that: "A just society is measured by how it treats its most vulnerable citizens. Canada must be challenged to become a leader in the care and protection of disabled, elderly, and other vulnerable citizens to prevent the killing of vulnerable Canadians."
The Euthanasia Prevention Coalition calls on the justice system to treat Chelsea's death in the same manner as any other child killing. People with disabilities are recognized as equal citizens by the Canadian Charter of Rights and Freedoms and should not be made to feel vulnerable by the dehumanizing of their existence in order to justify a very horrible and sad act. The justice system must not decide the fate of Chelsea's mother based on Chelsea's disability.
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Euthanasia Prevention Coalition, Box 25033, London, Ontario N6C 6A8, Canada. Tel: (519) 439-3348 Fax: (519) 439-7053. E-mail: euthanasiaprevention@on.aibn.com
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We were delighted to discover that there is to be a public meeting on 'Human Rights and Disability', organised by the Office of the High Commissioner for Human Rights, in Geneva on Tuesday 17 April (3 to 6 p.m.).
Coming during the 57th Session of the Human Rights Commission, the meeting will be attended by national representatives and we believe that this is a significant event in raising the profile of disability with the international community. However, our pleasure is muted by news that Mary Robinson is to leave her post as High Commissioner in September, not the least because there is no guarantee that her successor will share her concern for our human rights.
As some of the stories elsewhere in this edition make clear, the protection of our fundamental right to life is still far from secure, so the need to build on the progress made with the UN High Commission remains as pressing as ever.
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So often in the past-as many of our readers will know from their own experience-progress with governmental organisations was often only made with the support of senior people within the organisation. Both as an Irish politician and as High Commissioner for Human Rights, Mary Robinson has shown a real interest and concern for disability but, as the article about the European Bus and Coach Directive [see page 4, this issue] makes clear, there are plenty who will seek to frustrate our every move for equality.
Once again, this Directive has only been achieved with the enthusiastic support of 'insiders', in this case Members of the European Parliament, who have faced a nine-year battle to win even the limited progress made so far.
Disability remains a 'minority' issue that, all too often, is seen as nothing more than 'political correctness' with a high price tag. It is precisely this attitude that makes Kofi Annan's selection of a new High Commissioner for Human Rights so important.
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Finally, on the governmental issue, there has been a growing feeling in the UK that civil servants-rather than their political masters-may be the real barrier to progress. Our experience is that there are very few civil servants with any interest or understanding of disability. Disability issues are nothing more than a series of 'problems' to be solved and, when it comes to advising their Ministers, it would seem that, all too often, civil servants let them, and us, down.
Perhaps it is a career issue-being a departmental expert on disability brings little glory, unless one is finding the solution to the policy 'problem' of disability-but there are constant reminders that too few civil servants understand or care about disablement.
I am conscious that the Tribune has relied heavily on media reports in recent months and I am very keen to include more news from you.
You keep telling us that grassroots news from disabled colleagues around the world is an important feature for you, but we simply have not had enough material from you lately.
The Disability Tribune offers local organisations the opportunity to pass on news of their achievements and experiences. You don't need a press officer or the ability to write wonderful, flowing prose, just get the important details to us, and we can do the rest.
Richard Light
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A recent New York Times article reports 'a disastrous side effect' from a study seeking a cure for Parkinson's Disease that entails implanting cells from aborted foetuses into patients' brains.
Fifteen-per cent of the patients given the experimental treatment 'writhed and jerked uncontrollably', when the implanted cells grew too well and secreted an excess of the natural chemical that controls movement.
It would seem that there is nothing that can be done to undo the damaging side-effect, as there is no way to remove the foetal cells that have caused the problem.
The results, reported today in The New England Journal of Medicine, are a severe blow to what has been considered a highly promising avenue of research for treating Parkinson's disease, Alzheimer's disease and other neurological ailments.
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The study highlights the risks of seeking 'simple' solutions to complicated neurological impairments involving biological processes that scientists simply do not adequately understand.
Inevitably, The New England Journal of Medicine article simply lists the side-effects in clinical terms. Doctors who have seen the patients speak in a less detached way:
"They chew constantly, their fingers go up and down, their wrists flex and distend...
It was tragic, catastrophic... It's a real nightmare. And we can't selectively turn it off"
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Only now are researchers doubting the advisability of the 'treatment':
"We are absolutely and adamantly convinced that this should be considered for research only. And whether it should be research in people is an open question."
Source: 'Parkinson's Research Is Set Back by Failure of Fetal Cell Implants', by Gina Kolata, New York Times, March 8, 2001 [http://www.nytimes.com]
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A recent article in the American Forbes magazine suggests that the search for more effective drugs-the goal of many biotechnology corporations-is likely to have more to do with profit than cure.
Perhaps the greatest insight is provided by the comments of Kenneth Kupfer, from the German drug company Bayer: 'We want to bring more drugs, faster... making grandma's pills cheaper doesn't even enter the equation-that's a social question. The point is to improve upon traditional methods of drug development which, at this point, are little better than trial and error.'
According to the article, the drugs industry is facing an explosion in genetically-based 'leads' on new drugs, but the very number of alternatives may be a hurdle to the development of successful drugs.
As to the cost of drugs, the article claims that: 'Finding a new drug in the lab and getting it through the clinic to the market costs as much as $500 million', no wonder that mention can be made of drug treatments costing between $7,000 and $170,000 per patient per year.
Source: 'Genomics Won't Mean Cheap Drugs', by Matthew J. Herper, Forbes.com, Monday February 26 [http://biz.yahoo.com/fo/010226/0226drugs.html]. The homepage for the Forbes website can be found at http://www.forbes.com/
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On Wednesday 14 February 2001 a nine-year battle for a European law requiring accessible buses finally brought some progress in Strasbourg.
Richard Howitt, Member of the European Parliament [MEP] and President of the European Parliament All Party Disability Group said that this was an historic breakthrough in the campaign for accessible transport.
The move came in debate concerning the European Buses and Coaches Directive and will require 'a guarantee of level access to all new buses in urban areas for persons with reduced mobility'. Important though the Clause is, it still leaves disabled people in rural areas-where there are likely to be less alternative forms of public transport-waiting in vain for a bus.
During the course of the debate, Richard Howitt insisted that level access could only be achieved with 'a boarding aid-a lift or a ramp-because a low-floor bus on its own is not enough'.
Conservative MEP's tried to prevent the inclusion of even this level of accessibility, although the standard of debate was less than impressive. Malcolm Harbour (UK) claimed that the measure would require "complex technical mathematical calculations", his German colleague Paul Rubig accused supporters of the Clause of "trying to make a standardised cucumber" whilst the Swede Lisbeth Gronfeldt Bergman labelled it "political interference".
Are there any technically-minded cucumber measurers capable of resolving political interference out there? The Directive is due for approval by the European Parliament as we go to press-Ed
Source: News Release from Richard Howitt MEP.
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In a surprise announcement at the opening session of the UN Human Rights Commission in Geneva, Mary Robinson revealed that she is to leave her post as High Commissioner in September this year.
Mrs Robinson's departure is particularly bad news for the international disability community. Following a meeting with representatives of our community last December, we have recently learned that a public meeting-to discuss disability and human rights-has been arranged on 17 April 2001, during the current session of the Commission.
Mrs Robinson's decision, made public on March 19th, is reported to have been heavily influenced by increasing frustration over lack of funds available to the Commission to do it's essential work:
"I believe it is one of the major disconnects between the eloquence and fine language used by so many representatives of governments in speaking about human rights and the fact that the core budget allocates less than 2% to human rights work. Something has to change there"
As an outspoken champion of human rights, Mrs Robinson will be a hard act to follow. Her resignation has prompted particular concern amongst human rights monitoring organisations, making the selection of her successor all the more difficult.
Mrs Robinson-the former President of the Irish Republic-is quoted as saying that she thinks she can "achieve more outside of the constraints that a multilateral organisation inevitably imposes", surely a sad indictment on the current role and value of the United Nations, which has yet to make any response to her comments.
Expressing a view that many disabled people will share, she is quoted as saying: 'I've always recognised as High Commissioner the importance of standing up to bullies, addressing short-comings and being outspoken, an awkward voice.' Regrettably, during her four-years in office, States that she had 'named and shamed' for human rights abuses were only too willing to exact their revenge by blocking efforts to increase UN budgets.
The challenge for Kofi Annan, UN General Secretary, is to appoint someone with the strength of character to continue the work that Mrs Robinson has undertaken so single-mindedly.
High Commissioners for Human Rights are appointed for four-year terms and, although Mrs Robinson's first term of appointment expires in September, it is reported that Kofi Annan would have supported her application to serve for another term.
Source: 'Robinson quits UN human rights job citing lack of funds', Peter Capella and Ewen MacAskill, Guardian, Tuesday March 20, 2001.
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According to a article in The Boston Globe on 20 March 2001, the American College of Medical Genetics has stated that routine genetic testing for cystic fibrosis 'will and should be' offered to all couples who intend to have children.
An organisation representing the doctors who would offer the test-the American College of Obstetrics and Gynaecology-has declined to comment.
According to the article, the US federal Centres for Disease Control and Prevention has been preparing 'educational material' to made available in doctor's offices.
The Boston Globe makes it clear that experts on cystic fibrosis and advocacy groups have been against routine screening of the whole population, preferring selective testing for those who have reason to believe they may be carrying the CF gene. Wide scale screening is just not thought to be cost-effective.
The Globe notes: the medical genetics college, [is] an organization that represents genetics services providers and researchers...
Source: 'Cystic fibrosis tests urged for prospective parents', Richard Saltus, The Boston Globe, 20/3/2001 [http://www.boston.com/globe]
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The German self-help organisation for parents and sufferers of cystic fibrosis: Mukoviszidose e.V recently issued a statement about the possible introduction of pre-implantation diagnosis for cystic fibrosis.
In view of the reported plans to make routine testing available in the USA, we thought that the work of Mukoviszidose e.V provides a useful alternative view.
The opening paragraph of the statement, together with some comments made by members of Mukoviszidose e.V are provided below.
"As a self-help organisation for parents and sufferers, Mukoviszidose e.V. [Germany] shares the serious reservations about permitting pre-implantation diagnosis (PID)..."
"Health and happiness don't just depend on the absence of a hereditary disease: even a genetically healthy child can become chronically ill or disabled in the course of its life, and there are also parents with healthy children who are unhappy."
"Cystic fibrosis shouldn't be regarded as the worst-case reproductive scenario.' He also regarded his life as worth living. In addition, he saw a ban on PID as contradictory, given that abortion of an embryo in utero was permitted"
"Nowadays, statistical life expectancy says nothing about the prognosis for individuals. As an 18-year-old, according to the statistics I should have lived another three years, but I'm now 35, I have a job, and I'm married with a child of my own."
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Information is a key factor in the fight for better conditions for people with intellectual disability in Central and Eastern Europe. Many initiatives have been undertaken in these countries during the past ten years, but only very little information is available about their work and their successes. Inclusion Europe has now created a common platform on the Internet where all organisations involved can freely exchange their information.
There is a great need for the exchange of information on activities, projects, legal and social developments, meetings and conferences on intellectual disability in Central and Eastern European countries. But many local, regional or national organisations only share and distribute their information internally.
EurIDnet-CEE attempts to improve this situation. Without formal membership and any cost involved, organisations can share their reports, news, conferences, project information and initiatives with a large number of other organisations all over Europe. Access to this information will allow exchange of experiences and good practice, a better coordination of activities with other organisations, participation in relevant meetings and conferences, and facilitate the search for project partners.
Local, regional or national organisations can join eurIDnet-CEE on the website www.eurIDnet.org. "Presently, it is working only in English, but we accept texts in any European language. All information will have abstracts in English, German and French to be as accessible as possible to the organisations concerned," explained Valentina Škondric, contact person for this initiative. In eurIDnet-CEE users can join discussion groups on various subjects. There is an extensive calendar of relevant events together with country-specific information provided by participants of eurIDnet-CEE and the Secretariat of Inclusion Europe.
Inclusion Europe is confident that this initiative will bring about a better exchange of information and improved cooperation in the fight to improve the situation of persons with intellectual disability and their families in Central and Eastern Europe.
Contact:
Valentina Skondric,
Project Manager: eurIDnet-CEE
The European Association of Persons with Intellectual Disability and their
Families
Galeries de la Toison d'Or
29 Chaussée d'Ixelles
#393/32
B-1050 Brussels
Belgium Tel. : +32-2-502.28.15 Fax :
+32-2-502.80.10
E-mail : enlargement@inclusion-europe.org
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By Farhat Rehman
The rural disabled poor in developing countries are handicapped four times - their poverty, their rural background, their illness and disability. When there are cultural restrictions like seclusion of women in reaching and helping such disabled people, the efforts of community-based rehabilitation [CBR] workers are hampered.
Pakistan is an Islamic country with its own history and cultural heritage. The population of about 140 million is spread through four main provinces:
Groups among Sindhis, Punjabis, Baluchis and Pathans retain their own cultural and traditional customs, language, social system, dress and so on, but Islam is the main force which binds them all together.
Of Pakistan's four provinces, the North West Frontier Province [NWFP] is the smallest, with an area of 74,521 km. Although the province is small, it has the most varied landscape, climate, history, social and cultural situation. Specific traditions and customs of people living here form an important part of Pukhtoon (Pathan) society. These customs and traditions are closest to the heart of every Pathan, and are followed religiously. Modern Pathans have made some social changes - mainly as a result of mass media and education - but their centuries-old traditions and customs have changed little, rather, they have added a new layer to their way of life.
Pathans are men of swords and guns. Specially, the life of a tribal Pathan is governed by unwritten codes of conduct that have been revered for centuries; these codes embrace all their activities from the cradle to the grave.
Among the Pathans, one of the most obvious marks of traditional social status is the relative inactivity and invisibility of their women from the public and social scene. As a rule, men perform the manual tasks and work in occupations outside the home. By comparison, women work in the family home although, in some areas, they are allowed to leave the home to fetch water, fuel and fodder.
Strict purdah - or seclusion of women - has far greater effects than the activities in which they engage and the NWFP, in particular, has a reputation throughout Pakistan for conservative attitudes.
Women observing strict purdah usually remain inside walled-quarters. They may leave their homes to attend marriages and funerals, or visit relatives. In all these cases, women remain covered from head to foot. Doctors sometimes complain that women often insist on being inoculated through their heavy burqas or veils. At weddings and other occasions, men and women go to separate functions, in different parts of the building.
Pathan women and girls in bigger cities are receiving higher education and entering the professions, while still keeping purdah. They attend women's colleges and, for general lectures in an auditorium, they remain completely veiled and sit together in the front rows.
Purdah is, in short, one of the most important aspects of Pathan life and, in this regard, they are very conservative like their forefathers. In tribal areas and smaller towns in the NWFP, it is still unusual for girls to enjoy educational opportunities outside the home. Purdah is not simply a matter of personal choice for women, it is something that matters to the entire Pathan society.
The North West Centre Province has a population of 20 million, swelled by 3-million Afghan refugees. Eighty-six per cent of the housing in the Province is in rural areas. There are total of 1389 general health institutions, each of which serve a population of 12,000. There are only 10 physiotherapists in the whole province. All of them work in Peshawar, the provincial capital.
There are many welfare associations working in different fields within NWFP, including a number working with disabled children.
There are particular challenges for agencies involved in community based rehabilitation in Pakistan: firstly, people are reluctant to allow healers into their homes, preferring to visit the healer somewhere else (WHO CBR in Punjab - 1982 - 85, Jaffer and Jaffer). As a result, rehabilitation staff who make door-to-door visits often feel that people treat them like travelling salesmen, an electricity meter reader or beggar.
Secondly, in Pakistan, as in so many places, goods and services only seem to be valued when they have to be paid for.
Despite the challenges described above, the Rehabilitation Centre for the Physically Disabled [RCPD] began its work-from a 2 room rented house in the small town of Peshawar-in 1985. The Centre was launched by parents and professionals, with the aim of helping women and children in rural areas.
Many of the people involved in the Centre had gained previous experience with a five-year project with Peshawar UNICEF (1982 - 1987) and had found that in addition to rehabilitation services for children, parents and guardians also valued the opportunity to receive training in home management skills.
The Centre was originally staffed by volunteers and was open for four hours each afternoon; inevitably, there was little that could be done to expand the services offered by the Centre, although everyone was aware of the need to do so.
A particular strength was that, from the beginning, the Centre had the services of three female staff members. The presence of female staff, in a small day-care rehabilitation centre with a homely atmosphere, encouraged the local community to allow their grown up disabled girls and mothers of disabled children to benefit from the RCPD.
For the first few years, home visits by female staff to give mothers' training in home management and counselling also played an important role in developing community confidence.
As the Centre became established, there were periodic classes, seminars and workshops for community training in disability-related issues. In 1990, Primary Health Care classes were introduced, on a trial basis, for mothers attending the centre, including classes in family planning. These classes were popular and well attended, they consisted mainly of group discussions, supported by slides, charts and videos. Peshawar UNICEF provided some training material and the programme continues to run on an informal basis.
Although mothers were active participants in classes at the Centre, at seminars on networking with disability NGOs and human resources development, both supported by Peshawar UNICEF, all the participants were male. This highlights a particular difficulty as, during pre-seminar meetings with the local communities RCPD insisted that mothers should participate; despite assurances from the men of these communities, there was not a single female participant present in either seminar.
The results achieved in the first few years of the Centre brought a growing realisation that it would not be possible to provide training to both men and women through a common program. Despite these minor setbacks, the number of children brought to the centre for rehabilitation increased every day.
To meet the challenge of reaching as many disabled children in rural NWFP as possible, we started our Outreach Program (ORP) in 1992. It extended its area of work over the following six years to 96 different towns. The Outreach Programme included disability prevention and rehabilitation camps, awareness raising, training of parents and helping local communities to form their own groups and NGO's. Within 6-years, the Programme had encouraged the growth of a number of new groups and the launch of three local RCPD centres, with the support of parents and local community groups.
The Outreach Programme made it very clear that, if RCPD were to succeed in reaching women, they had to build programmes and policies that took account of purdah.
Slowly we modified our work patterns to better account for local tradition, we arranged more refresher courses and short-term practical training for our home management unit staff. Communication methods, particularly with mothers, were taught with great care.
At the beginning of 1997, we started formal seminars for training rural women in "Primary Health Care and Prevention of Childhood Disabilities" which, in addition to meeting their main aim, encouraged the growth of more local groups, supported the growth of more development NGO's for women and increased community awareness of the work of such groups.
The need for a disability-related network at the national level became obvious with the expanding work of Outreach Programmes. From 88 towns all over Pakistan, 231 NGOs became members of the network and the Outreach became 'Rehab Pakistan' in 2000/ 2001.
The RCPD, which was already working as a resource centre, conducting physical and vocational rehabilitation, publishing disability-related material and undertaking a human resource development programme increasingly collaborated with 21 similar NGOs (Feb 2001), with contacts and programmes in another 15 towns.
In mid 2000, a disabled women's group was formed at RCPD, to help empower women with disabilities. This is a challenging task in a country with strict social and cultural norms. The group started work in 6 different towns with the support of local NGO's. These groups are committed to promoting the equality of women and human rights in general, supervised and run by disabled women.
Earlier this year, RCPD launched an inclusive education school for disabled children, refugees, the poor, girls and children from ethnic minorities, along with a few non-disabled children and disabled adults.
The school has started on an experimental and small-scale basis.
In a society where the mobility of men and women is restricted, particularly because of the exclusion of women and cultural restrictions, hundreds of thousands of disabled children and their parents, especially mothers, are left without assistance.
From our experience, we believe that programmes that respond to cultural traditions can be used widely in other areas of Pakistan, promoting gradual change at the community level without disturbing traditional values.
Ms. Farhat Rehman,
Director CBR Programs
Rehabilitation Centre for the Physically Disabled
Swati Gate,
P. O.
Box 201
Peshawar
Pakistan . Email:
fht_rehman@hotmail.com
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The disabled or non-disabled paralympian problem has still to be resolved (see 'Paralympic naughtiness?', page 3, Disability Tribune December 2000/January 2001 issue), according to a recent BBC Online report.
In December, all members of the winning Spanish basketball team at the Sydney Paralympics were forced to return their gold medals, after ten of the twelve team-members were found not to have an impairment. In January, the International Paralympic Committee suspended all athletes with learning difficulties, although provisional certification can be obtained, until a new eligibility process is finalised.
According to Donald Royer, a member of the International Paralympic Committee: 'This is a dramatic and global problem which cannot be reduced to only one national team.'
Despite the controversy, competitions involving learning-disabled athletes continue to be organised, including the Paralympic Winter Games in Salt Lake City in 2002.
Also suspended in January was the International Sports Federation for Athletes with an Intellectual Disability, the organisation that the International Paralympic Committee holds responsible for the problems in Sydney.
The problems at the Sydney Paralympics mean that athletes that took part now face enquiries from their national organisations, who have been asked to 're-examine the status of athletes who competed in Australia'.
Another victim of the controversy is Fernando Martin Vicente, vice-president of the Spanish Paralympic Committee who resigned as allegations concerning the Spanish team broke.
Mr Vicente has also resigned as president of the Spanish Federation for Mentally Handicapped Sport.
Sources: 'Official quits over Spanish scandal' Thursday, 30 November, 2000, 15:04 GMT and 'Concerns emerge over Paralympians' validity' Saturday, 10 March, 2001, 18:40 GMT, both from BBC Sport Online.
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