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Article Published June 12, 2000, Vol. IV No. 10
POST-1901 CENSUS NEWS (Canada)
By: Gordon A. Watts, firstname.lastname@example.org
Greetings Readers, and Members of Parliament
LATE BREAKING NEWS
Report of Expert Panel Delayed
The Report of the Expert Panel on Access to Historic Census records, originally scheduled to be brought down by 31 May 2000, has been delayed. In response to an email I wrote to Mary Ledoux of Statistics Canada I received the following on Monday 5 June 2000:
MP Murray Calder Presents Bill
MP Murray Calder, on 2 June 2000 presented to the House of Commons a Bill to obtain access to Historic Census records. His Bill (C-484) replicates that of Bill S-15 presented by Senator Lorna Milne, currently in second reading in the Senate of Canada. As both Murray Calder and Senator Milne are in the Liberal party, I would encourage the Honourable John Manley to accept the wording of these Bills as suitable for a Government Bill and proceed with the business of getting them passed and enabled.
On 11 May 2000, Murray Calder presented to the House our petition on release of Post 1901 Census. The petition contained more than 6000 signatures of residents from every Province of Canada.
Senator Lorna Milne speaks
On April 29, 2000 Senator Lorna Milne addressed the Annual Meeting of District Two of the Ontario Genealogical Society at Woodstock, Ontario. She was kind enough to provide me a copy of her speech, the text of which follows:
Ladies and Gentlemen, I am truly honoured to have been invited to take part in this historic Year 2000 annual meeting for Region Two of the OGS — the first such meeting of the new millennium, if you would believe some pundits!
As genealogists we are all keenly interested in the history of one particular Canadian, the “little guy” — the person I am here to stand up for today. This was the individual citizen, our ancestor, who came to this country, opened it up for future generations, worked from dawn to dusk alongside his wife and family in a true working partnership all of their lives, and never made it into the history books with the so-called great of the land.
As the prominent historian, Father Joseph Gravelle of Otter Lake, Quebec, said before his death in 1971:
Genealogy is not concerned with Blue Bloods and First Families but rather with the Little People who made up the backbone of the country, who pioneered and settled and made their own contributions in their small and untrumpeted ways.
We all can read in every library about the great movers and the shakers of the day, but the ordinary people are the real heroes of history; they are the ones who actually made it happen, so I want to talk about being able to access their stories, now that Statistics Canada has seen fit to reinterpret, actually misinterpret, the regulations for the 1906 census and a 1918 law to mean that no results of any census taken after 1901 will be released EVER to the public.
I am not the only one in Parliament who shares this concern. John Bryden, MP for Wentworth-Burlington, has introduced a Private Member’s Bill about Access to Information that actually almost made it onto the floor of the House for debate, but it has been dropped again to the bottom of the Order Paper. And I must tell you quite frankly that the chances of any Private Member’s Bill actually getting all the way through the process to become law, is both time consuming and fairly slim. This is the second time that John has tried to get this type of a bill through. So you can imagine what an extremely narrow chance a Senator’s Private Members Bill really has of ever becoming law.
Bureaucrats really do hate to let the public have access of any kind to government information. They seem to labour under the paternalistic delusion that it belongs personally to them, rather than to the people of the country. As I mentioned, a few years ago, genealogists, historians and demographic and medical researchers discovered, to their horror, that Stats Canada was not going to allow the National Archives to release any further census results after the release of the 1901 census in 1993, after the traditional passage of 92 years to ensure an individual’s privacy. In fact it was John Geysson of Pembroke, the President of the Upper Ottawa Valley Genealogical Group, who brought it personally to my attention although I knew that members of the Ontario Genealogical Society had been getting agitated about it at least a year earlier. Like most of us, I had assumed it was a bureaucratic error that would quickly be corrected.
After a vain attempt to get MPs interested in taking on this project, I decided to do something about it myself, and began the necessary research to write a Private Member’s Bill (I guess in the Senate we should call them Private Senators’ Bills!) In the meantime, with the help of a great many genealogists and historians, I also instigated a speech-making, letter-writing, faxing and e-mailing campaign to MPs and Minister John Manley, who is in charge of Statistics Canada. The campaign was the important part of this effort. In fact it was the vital part, and I believe it is going to pay off, because Minister Manley’s office was absolutely flooded with paper, not only from Canadian researchers, but from all around the world. I think they could paper the walls of the entire department with all the letters and e-mails they received. MPs from across the country also were flooded with our concerns, and they began to press Mr. Manley as well. So much so, that he has put together a “Panel of Experts” (mind you, no genealogists are included!) to investigate the subject and advise him, by the end of May, on a method to implement access to the census. I do believe that Mr. Manley sincerely wants to be able continue to allow us this historic access to our own records.
Hopefully the panel will find a way to do so, but in the meantime my own Access to Census Records bill is purring along at the Second Reading stage in the Senate. If the panel disappoints us all, I will once again start to push the bill, and I may be calling on you all for continued public support.
I am happy to tell you that Bill S-15 has received the support of many of my Senate colleagues and that support for it in the House of Commons is growing. This is due, by and large, to the efforts of many you in this room and to fellow genealogists and historians from across the country, who have made it clear to their representatives that they do not want to lose access to this important information.
I want to point out, once again here tonight, that, unless we can change the law and open up these extremely important census records, we will all lose access to the single most valuable resource that reveals the entire history of the 20th Century in Canada. This is our history! We will never be allowed any access to the first census records of western Canada, the 1906 census, the one taken right after the provinces of Manitoba and Saskatchewan were formed. Anyone whose family immigrated to Canada during the 1900s will never find their roots in the census. Anyone who is trying to prove their western Métis or Aboriginal background will never be able to do it, because such a background can only be proven through family groupings. Anyone who is tracking the generational western movement of settlement patterns in Canada will never be able to do, except anecdotally. Anyone who is tracing an inherited disease, to help identify and treat people who should be aware of their possible condition so that they can make informed decisions on that basis, will never be able to properly do it. Anyone who believes that there was a Government conspiracy to identify and intern immigrants from the Ukraine during the first World War, will never be able to find out if the census was improperly used for this purpose, and I can tell you that the suspicion is rampant among Canadians of Ukrainian back-ground, nor will the Government be able to lay these widespread fears to rest. And I could go on and on.
I believe that after the 1901 census was released in 1993, some bright soul in Stats Canada actually reread the regulations under which the 1906 Census of Western Canada was taken, and panicked! They asked the Department of Justice to give them a legal opinion, and our troubles began.
So let me tell you some of the facts.
Clause # 26 of the 1906 regulations, part of the “Instructions to Commissioners and Enumerators” section states:
26. Every officer or other person employed in any capacity on census work is required to keep inviolate the secrecy of the information gathered by the enumerators and entered in the schedule or forms. An enumerator is not permitted to show his schedules to any other person, nor to make or keep a copy of them, nor to answer any question respecting their content, directly or indirectly; and the same obligation of secrecy is imposed to commissioners.... The facts and statistics of the census may not be used except for statistical compilation, and positive assurance should be given on this point IF A FEAR IS ENTERTAINED BY ANY PERSON THAT THEY MAY BE USED FOR TAXATION or any other object.
This clause was used as justification, by the lawyers of the Department of Justice when they were asked for an interpretation of Clause 26 by Stats Canada, for a legal opinion that it would be against the law to release the 1906 census, or any further census results, forever. And this was in spite of the fact that the IDENTICAL clause (Clause 23) was included in the regulations under which the 1901 census was taken — that’s the one that has already been released, with absolutely no adverse consequences or complaints I might add. I want to re-emphasize that this secrecy condition was ONLY included in the instructions to the census takers, and clearly applied ONLY to those contemporary employees of the government.
Isn’t it too bad that the lawyers did not read just a few pages further on, where the regulations go on to state equally clearly that the census was “intended to be a permanent record and WILL be stored and preserved in the Archives for future reference”? We must also remember the important fact that NOTHING was private in the Archives at that time. There were absolutely NO restrictions on access to any of the holdings.
What had changed in the interim between 1901 and 1906? Absolutely nothing! And furthermore, this so-called ‘promise of perpetual secrecy’ that is made so much of by Stats Canada and the present Privacy Commissioner, was NEVER mentioned or debated in the House of Commons, or in the Senate, or in the newspapers of the day! Never!!!! I am absolutely certain that secrecy, ad infinitum, was not intended by the legislators of the time, and that no one but bureaucrats even knew about it, for it was tucked away in the regulations, and only in the section that was meant solely for the census takers of that time.
So I must tell you that, in my opinion, Stats Canada is clearly breaking the law by refusing to allow the release of the 1906, 1911 and 1916 census data, after 92 years have passed. In fact it is my understanding that the present National Archivist has written to Statistics Canada demanding the release of these censuses to the Archives.
Now in 1918 matters changed somewhat when a new Statistics Act was passed, and secrecy provisions were included in the act itself , although still only within the section that pertains to census takers and commissioners and clearly intended for the census workers of that time, so it is really the 1918 Act, and all subsequent Acts, that we must work to have changed.
It is quite clear to me that any concern that Canadians have about the release of confidential information is contemporary, and not historical. In 1906 their concerns were about the government using the census data for taxation purposes. By 1931 the major concerns were that the census not be used, “in connection with taxation, military or jury service, with the compulsion of school attendance [that one has certainly fallen by the wayside] with the regulation of immigration or with the enforcement of any national, state or municipal law or by-law.” By 1951, when Stats Canada changed to individual forms for each household, the instructions included non-disclosure to “other government agencies such as income tax, national defence, etc., or to any private organization.” There’s another rule that has certainly been trampled, as Stats Canada now regularly sells information to private organizations right and left, even as it refuses permission for the National Archives to release the early census data! Strictly speaking, it may not be “personal data” but it is identifiable right down to your postal code!
An additional irony behind all this is that the Archives already has in safe-keeping the 1991 census in its entirety! Four huge football field sized rooms full of the raw, un-microfilmed census forms are sitting there, sealed in plastic in climate controlled comfort at the taxpayers’ expense! I have seen them!
I KNOW that Canadians’ concerns about privacy were then, and still are, contemporary. We have proven that we are not concerned about the privacy of our ancestors’ information, or its being released to the public after 92 years have passed, because there has never been one single complaint about the release of historical census information, either to the National Archives or to the Privacy Commissioner! NEVER! Not one!!!! Not even in the Province of Newfoundland and Labrador, where the 1931 census has already been released!
As genealogists, it is incumbent on us all to continue pushing for an end to this official stupidity; for the right to access the historic data in our Canadian Census. I must tell you that the work I have been privileged to do on Bill S-15 fills me with great pride. I feel proud because the outpouring of support for this undertaking shows me that we Canadians are mindful of our history. We want our family stories to be told and passed on, not forgotten by future generations, or locked up in the vaults of Stats Canada forever. I believe it was the American philosopher, George Santayana, who said, “Those who cannot remember the past are condemned to repeat it.” Family history gives our younger generations this memory, a firm foundation to stand upon while they explore their future.
I urge all of you here today to keep up the good work in your research, and to keep the pressure on your representatives in our campaign to make the census material available to us all. John Finlay, here in Oxford, needs some heavy duty persuading!
My bill suggests one solution, but when the Expert Panel produces its ‘Report to the Minister’ next month I will need your help once again. It will be essential, again, to rev up the pressure on your local MPs and on the Minister, to make sure that he really does bring in legislation to correct the problem. Whether it is a version of my bill which offers a solution, or completely different does not matter. The end result does. So, in advance, I thank you! But get ready to write those letters and send those e-mails!
Debate on Bill S-15 continues in the Senate
On 4 May 2000 Senator Joan Fraser continued the Debate in the Senate of Canada on Senator Lorna Milne’s Bill to obtain access to Historic Census records. The extract from Hansard is copied below. If you look carefully you might see a name that you recognize. <]:-)
Debates of the Senate (Hansard)
Session, 36th Parliament,
May 4, 2000
Bill to Amend-Second Reading-Debate Continued
On the Order:
Resuming debate on the motion of the Honourable Senator Milne, seconded by the Honourable Senator Chalifoux, for the second reading of Bill S-15, to amend the Statistics Act and the National Archives of Canada Act (census records).-(Honourable Senator LeBreton).
Hon. Joan Fraser: Honourable senators, I should like to say a few words about Bill S-15, if you will bear with me. I shall bear in mind that the hour is late.
I should like first to congratulate Senator Milne for her indefatigable work in this valuable cause. When she began with an inquiry in the last session of Parliament, I think some of us thought that she was talking about something fairly obscure, something that was of interest to a few Canadians, but not really of general importance. Now we know better.
This bill addresses what threatens to create a serious gap in Canada's historical record - the policy of Statistics Canada that individual census records from all censuses from 1911 on must remain secret in perpetuity. Statistics Canada believes that this policy is grounded in law and in a promise made by Sir Wilfrid Laurier in 1906. Given that belief, Statistics Canada is correct in refusing to make the individual census returns available to researchers, unless instructed to do otherwise by Parliament.
There is room for some argument about whether Statistics Canada's belief is correct. I was particularly interested to read a brief by Gordon A. Watts, of Port Coquitlam, B.C., that was submitted to the Minister of Industry's expert panel on the release of historic census records. Mr. Watts has done a careful search of all the parliamentary debates in 1905 and 1906 relating to statistics and the census. He has been unable to discover any place where Sir Wilfrid in fact made this famous promise to Canadians. Indeed, Mr. Watts says there was no debate at all about privacy, confidentiality or secrecy relating to information regarding identifiable individuals - no debate at all. There was a major debate in 1905 about the new act respecting the census and statistics, but it did not, he says, touch upon secrecy.
What actually happened, apparently, was that secrecy was imposed at that time not by legislation or by a prime ministerial commitment to Parliament but by regulation. The regulations were drawn up by the then minister of agriculture, Sydney Fisher and, under the terms of the act, acquired the force of law. As is so often the case now, as then, there was no debate in Parliament about these regulations.
In a later revision of the actual legislation in 1918, they were incorporated into the law itself, presumably because by that time they had become accustomed to practice. Indeed, in practice, the Dominion census had been providing confidentiality for individual returns ever since Confederation, which in 1905 was still fairly recent history, well within the lifetime of most parliamentarians. However, the question of perpetuity does not seem to have been addressed, and that is what concerns us today.
In fact, Mr. Watts suggests that the famous secrecy surrounding individual records may have been imposed almost by accident or, in any case, as a simple corollary to the rule that corporate records had to be protected, because companies obviously did not want their competitors to have access to details about their operations. I cannot say what Minister Fisher had in mind when these regulations were adopted. However, we can easily conclude, upon reading the instructions given to the employees of what was to become Statistics Canada, that the fundamental point was to reassure Canadians that their records could not be used by other government departments. We could not then and we cannot now use these records for income tax purposes, military service, immigration and so on. This is of course essential for any census in a free and democratic society.
However, to say that we can never use these records, even generations later, for legitimate research purposes, seems to me to be going rather far, too far.
Even if it is true that Parliament originally intended the records to remain secret forever, it is the job of each succeeding Parliament to reassess past policies in light of present needs. Parliament today has the right to change a decision made by Parliament in the past, even a decision made after lengthy and full debate. When the original decision in question was made by simple regulation, not debated at the time, there is even more reason to revisit it now, nearly a century later.
Senator Milne's bill offers a neat solution by having Statistics Canada transfer the individual returns to the national archives, which would, 92 years after each census, then make them available for research in proper archival terms. Ninety-two years is the period that was applied for the release of individual returns in all censuses before 1911, so it has the virtue of consistency. As I suggested here last year, however, I think we should perhaps consider lengthening that term slightly, now that so many people are living well into their nineties. I think it would be appropriate to have a 100-year term or perhaps even a little more. Clearly, we do not wish to invade the privacy of persons who are still alive.
The basic principle that these records should become available at some point is, in my view, indisputable. They are simply too important as historical records. They are useful for genealogists like Senator Milne, but also for historians, social scientists and even for some physical scientists such as biologists.
The information they provide is literally irreplaceable, not available from other sources, or not available in this detailed, comprehensive form.
Other major countries have considered this dilemma, this need to reconcile the need for privacy with the need for good historical records, and they have concluded that, after a suitable period of secrecy, the individual returns should be made available. Australia and the United States, for example, have both reached that conclusion. I believe that Canada should do likewise.
The expert panel is expected to report by the end of this month. I hope it will make appropriate recommendations to end this policy of perpetual secrecy, and if it does make those recommendations, perhaps the government will act accordingly and rapidly. If not, however, Senator Milne's bill is here to ensure that the right thing will in fact be done, and I am more than pleased to support it.
On motion of Senator Kinsella, for Senator Johnson, debate adjourned.
Submissions to the Expert Panel
One of our Committee members, Muriel Davidson requested others to join with her in putting together a submission to the Expert Panel on Access to Historical Records. The main thrust of her submission was to deal with genetically inherited diseases. Her support documentation included email sent to her by others who have been affected by Genetically Inherited Diseases.
GENETICALLY INHERITED DISEASES
Submission to the Expert Panel on Release of Historic Census Records
Prepared by Muriel M. Davidson
April 20, 2000
Esteemed Members of the Expert Panel:
Re: Genetically Inherited Diseases Submission
Many family researchers have found potential “time bombs” in the familial data they have collected. I have been one of these researchers, and suggested a combined submission about Genetically Inherited Diseases. Many have submitted suggestions, and I have tried to include a cross-section of known inherited diseases.
We have used all sources of proven and true research papers, and all agree the only true picture of the lives of our ancestors is within the Canadian census records. We are very anxiously and hopefully awaiting the release of the 1911 records in 2003 - we only wish we would be able to view later census records within a short time for medical reasons.
Families with inheritable diseases/genes live from day to day - one never knows when the disease will pounce again … that is the way we feel.
The internet has provided much information about ALS, Q-T Syndrome, Paget’s Disease, Alzheimer’s, Osteoporosis, Depression, Diabetes and others - but it is the daily personal living in fear, not knowing how far back the defective gene was in action.
Personally, I was fortunate to have family history from my grandfather; he gave me information as he knew it, and I have found he was correct. Ironically, I am unable, at the present time, to learn the information my grandfather provided for the 1911 Census .
Citizens of Canada, plus many with Canadian roots, anxiously await your report. We sincerely hope all members of the Expert Panel will be in favour of census release, not just for family trees, but for important medical records. Being able to provide our doctors with substantiated records would save long waiting periods prior to a diagnosis, as happened to my youngerst brother, now 61, a victim of Multiple Sclerosis for 37 years.
Many thanks for working as members of this very important committee.
Muriel M. Davidson
PERSONAL FAMILY DISEASES
By Muriel M. Farquhar Davidson, U.E.
Family researchers, searching for roots of their past, became aware of
the possible non-release of Post-1901 Canadian census records years ago. In
1993, when the 1901 Canadian census was released, the fact was re-emphasized it
might be the last release. The 1901
Canadian census records were the first to include dates of birth, adding to
one's family history.
I first learned about this disease, although called by another name,
while researching the Loyalist family history of my gr.gr.gr.grandfather,
Finley McIntosh. He was a member of the
76th Regiment of Foot, native of Glenelg, Scotland, arrived in Shelburne, Nova
Scotia on November 5, 1783, following disbandment in New York City.
My tabulated family history of brain tumors only covers 40 years. The list includes people of various ages and seems to be a maternal disease pattern.
This irreversible eye condition leads to blindness -- again from my maternal family. One aunt, now 98, blind from macular degeneration, hopes to "SEE" her name on the 1911 Canadian census records -- she was born in Bucksport, Maine in 1902.
There have been too many cases of this dreaded disease – from both maternal and paternal families. Many family members have suffered various forms of this illness.
Arthritis and Osteoporosis
Paget's Diseases include some of
the above: multiple sclerosis, osteoporosis, arthritis -- there is a great deal
on the internet re: this subject.
Diseases in Adoptions
Not all Genetically Inheritable Diseases are passed down from
generation to generation -- but unknown to the new parents of an adopted child,
the disease comes with the child, having been passed down in the child's
family. One brother and his wife adopted two children.
Two Hopes For the Future
·A question to be
added (or substituted) to the 2001 census questions, asking for people to list
known Genetically Inheritable Diseases with a YES or NO. Reason:
The present question, " deaf, dumb, blind, insane" and others have
been criticized by many. Instead, should I find a YES to any one of these, it would be treated as an answer to a
possibly previously unexplained medical condition.
The following letters formed part of Muriel Davidson’s submission to the Expert Panel and were included with permission of the senders. Those letters copied here that identify the writers are also done so with permission. While the original submission to the Expert Panel include identifying information, the names of some of the writers have been withheld here by request
By Don Nisbet
Subject: My Letter on Genetic Disease for the Expert Panel
Dear Panel Members:
One year ago my sister and I buried our mother. The feelings of loss when a parent dies are no doubt familiar to those on the panel, but I believe the end of her life must have seemed a blessing to my mother as it ended seven years of suffering and loss.
My mother was another victim of Alzheimer's disease.
Watching my mother slowly reduced from a healthy and independent woman looking forward to enjoying the remaining years allotted her to a confused and fearful person, stripped of dignity and spirit and with seemingly no capacity to enjoy even the simplest things, was painful beyond description for those of us who loved her. Only those who have gone through it can possibly understand.
But our sadness would not have been unfamiliar to my mother. My aunt manifested the symptoms of this illness six years before her and she had to watch her suffering as well. In 1956 they buried their mother after years of coping with the burden of caring for my grandmother during her long battle with that same terrible disease. Our grandmother carried her own memories of the effects of Alzheimer's disease on a family as she, as the youngest daughter, carried the responsibilities of caring for her own mother in the last years of her life -- another victim of that disease.
I have since learned that I have had great-uncles and great-aunts and cousins as well die from the effects of this nasty form of dementia. It is now beyond question that this disease is in some way being genetically handed down in our family and the fate of my mother, grandmother, and great-grandmother may very well be my own.
There is but one hope for myself and the younger members of our family: the cause of this form of genetically transmitted Alzheimer's Disease must be found and research for a cure must be pursued. I am doing what I can.
As a genealogist I have undertaken the sometimes difficult and frustrating work of compiling my family tree by gathering information from public, private, and family records and memory and turning that family tree into a medical pedigree of sufficient detail and depth that it will be useful as a research tool for genetic scientists seeking the causes and the cure of this terrible disease.
Such medical family trees are the bedrock of research into the causes of almost every disease known to be genetic in origin. Already large family trees have proven the key to uncovering the genes that cause Huntington's Chorea, Cystic Fibrosis, Muscular Dystrophy, and dozens of more common diseases such as types of cancer, diabetes, and heart disease. Canada has been among the leaders in this type of genetic research and many similar studies using family trees are underway across the country. But more needs to be done.
I am hoping to offer, with the full knowledge and blessing of family members, our family tree to genetic scientists studying familial Alzheimer's disease in the hope it will lead to progress and bring future relief to the tens of thousands of Canadians who face this disease. When my tree is converted to a medical pedigree all identifying information is stripped from it making it anonymous so it may safely be shared with the medical community. I fear the disease more than I fear the remote possibility of my privacy being violated.
Compiling a family tree as accurate and complete as I have done would not have been possible without access to Canada's historical census records. The loss of such future access will significantly damage both genealogy and research into genetic diseases of that there is no doubt in my mind. I feel the privacy violation, if it can even be remotely considered as such, of granting to historians and genealogists access to census records after 92 years is little to ask for so large a gain. I do not accept that the supposed privacy when the rights of the dead take precedence over the right of the living to enjoy healthy and productive lives.
I respectively ask the panel not to forget the real consequences on the lives of hundreds of thousands of Canadian men, women, and children suffering genetic diseases now and in the future if historical censuses are closed or destroyed.
They deserve a voice in this debate.
By Muriel M. Davidson
Personally I am one of the fortunate ones with diagnosis years ago. My two sons have also been diagnosed, but my daughter did not inherit this gene, nor did her children. There have been other family members known from previous generations.
Many family researchers have studied Canadian census records of 1871, 1881, 1891and 1901 -- we are grateful for some of the personal questions asked by enumerators when it seems a family member "disappeared" -- yet still living. Working with church records, we find there generally is NO recorded trace of the relative's disappearance among our census records.
Years ago, in my family, as in many other families, family members were admitted to the "county home" or "poor farm". with personal family history denoting a mental disorder. This disorder was possibly a form of depression -- unrecognized years ago.
Part of my personal treatment is a great deal of "people contact":-
4. Recently serving as liaison for 31 local Brampton service clubs with the local city newspaper, where I had been women's editor. This is a challenge -- a first!!
My two sons combat their depressive problems differently. The oldest son is in sales and administration at a large motorcycle shop, races motorcycles and gets rid of any nagging problems at the gym.
In summary, many who suffer from depression could live a normal
community life through acceptance. People need to be accepted for "what
they can do" -- not "what they have". This is
As an active member of the internet-based Canadian Census Release
Campaign, it is our sincere hope the Expert Panel will report favourably to
have the 1911 and future Canadian census
Your description of the way you live with Clinical Depression was very moving. My wife, Doreen, is one of the people that was at the door of a full breakdown before a doctor realized what was happening.
and PROLONGED Q-T SYNDROME
To Members of the Expert Panel:-
Lloyd A. Horrocks, Ph.D.,
(Following is from internet research - type in FABRY on your search engine)
If a male with Fabry disease and an unaffected (non-carrier) female
have children, all of their daughters will be Fabry carriers and none of their
sons will be affected with Fabry disease.
Fabry disease occurs in all ethnic groups. It is estimated that one
person in 40,000 has the disease.
The disease progresses very slowly and symptoms of kidney, heart and/or neurologic involvement occur between the ages of 30 to 45. In fact, many patients are first diagnosed when the accumulated storage material begins to affect kidney or heart function. Therefore, it is important to annually monitor kidney function by blood and urine tests because kidney disease is a major complication that can occur in affected males.
To Members of the Expert Panel
I have two brothers with a disease that the doctors say is passed on in the family. My oldest brother has had this since age 6 weeks and is 47 now. The family has many times been told because of the high temps and swollen spleen and all the rest that he would not make it through the night.
He spent most of his young life in hospital and away from home. He was a medical ? in Canada and the United States til he turned about 18 years old.
My other brother started with differing symptoms and was diagnosed later in teem years. Both are under treatment and will be all their life when an attack occurs and we are looking for where and when in the gene pool this was introduced.
They say of all who have this it can be traced to Jewish background. It could have been way back when but it could have been within 100 years.
This is what got me started on tracing family history and I am staggered at the opposition to release of census due to the stumbling blocks that it puts in front of me. It is hard enough researching and hitting brick walls.
I understand the dilemma because of working the census for over 25 years but a date of 100 years would be sufficient for protection of material. Just how many live beyond 100? A few – but I am sure the ones that do would not worry as that is the past.
Name withheld by request.
Thank you Muriel for your note. It was very touching to me & very kind of you to write & tell me you enjoyed the posting on the Wells family mailing list. I’m glad it was forwarded on to you.
My father died 10 years ago from ALS, which I believe is a form of Multiple Scheroses & it was really hard to see him go to such a terrible disease in such a short time & knowing there was nothing I could do to stop it. Sometimes we just don’t understand why God lets these terrible things happen to such good people.
After some time passed I started searching my family history to learn about my ancestors & also to try to find out infor on the causes of deaths of not only his family but my mother’s too. I wanted to have another child but did not want to pass on a bad gene to another generation. I was told by my family doctor there was no way of know if I was a carrier back then, if I had a son then the chances might be higher. I had a daughter but the thought never goes away. She will never know the love & kindness of her grandfather but she is my sunshine.
My dad would have loved the treasure hunt I have been on looking for infor on his XXXXX family, not just for the medical infor but for the family history & tracing them back in time to learn more about their lives & the times they lived in. I don’t find any such illness in his line but it was not known by that name many generations ago.
I didn’t share this story with the mailing list - my father wasn’t from the Wells family but I couldn’t help post the note to let others know the importance of learning their family medical history if not for themselves then to do it for the sake of their children.
My father-in-law had diabetes & he has passed away a few years ago. His mother lost both her legs from it & now my brother-in-law- found out he also had it a year ago & and has lost a foot due to it. I have had my husband checked & my ofdest daughter checked & will always keep that in mind in the future to watch for the signs so we can catch it early.
I just hope others will be aware of learning more about their medical history & discuss it with their family doctors. The more we learn about our medical history the better we can help the doctors to treat our families.
Thanks again for your note &
Happy trails in all your researching in 2000
AMYOTROPHIC LATERAL SCLEROSIS (ALS)
Internet Information from
ALS Society of Canada <email@example.com>
ALS is a rapidly progressive, fatal neuromuscular disease. It attacks the motor neurons responsible for transmitting electrical impulses from the brain to the voluntary muscles
throughout the body. When these muscles fail to receive messages, they eventually lose strength,
atrophy and die. There is no known treatment.
Anyone can get ALS. Over 3,000 Canadians currently have the disease. Two to three
Canadians die every day of ALS.
Why is it known as Lou Gehrig's Disease?
Lou Gehrig, a famous baseball player in the U.S. during the 1930's, became afflicted with ALS. He was known as baseball's "Ironman". Strength, agility, excellent health - Lou Gehrig had everything it took to become a baseball legend. But Lou Gehrig had something else. At the peak of his career, he was diagnosed as having Amyotrophic Lateral Sclerosis (ALS). He died at the age of 38.
When was ALS first discovered?
ALS was first described in 1869 by Jean-Martin Charcot, a French neurologist. Since that time a number of theories about the cause of ALS have been developed. Some scientists believe it is possible that ALS is caused by a slow-acting or latent "virus". If it is caused by an organism, there is absolutely no fear that it is contagious. There is no increased incidence among medical personnel who deal with ALS patients. Work has also been done on the possible role of the thyroid gland and trauma.
What causes ALS?
The cause is not yet known although several theories are now being researched. At present neither a cure for ALS nor a means of prevention is known. In 1993, scientists announced in a paper published in the British journal "Nature" that they had isolated the gene associated with about 20% of the cases of the inherited form of the disease. While only 10% of ALS patients have this genetic predisposition there is no evidence of a clinical difference between the familial and the sporadic forms of the illness.
What about environmental causes?
The very high incidence of ALS on the island of Guam, in Western New Guinea and on Kii peninsula of Japan may provide some clues about environmental influences. Heavy metals such as lead and mercury are suspected causes, as is aluminum, which can poison the body and cause ALS symptoms. Some people may have a genetic makeup which makes them susceptible to an environmental cause of ALS.
What parts of the body does it affect?
Because it attacks only motor neurons, ALS does not affect the mind. The person with ALS remains mentally sharp and in full possession of the senses of sight, hearing, taste, smell and touch. Bladder and bowel muscles are generally not affected by ALS. ALS seldom causes pain, although some people do have cramps and secondary discomfort from lengthy sitting or lying down.
Is sexual function affected by the disease?
Are there different types of ALS?
There are three classifications:
Sporadic (which is the most common form of ALS)
Familial (a small number of cases suggest genetic inheritance of ALS)
Guamanian (a high number of cases of ALS occur in Guam and the Trust Territories of the
What are the early symptoms of ALS?
ALS usually becomes apparent either in the throat or upper chest area or in the arms and legs. Some people begin to trip and fall; some lose the use of their hands and arms; some find it hard to swallow and some slur their speech.
Can you "catch" ALS? And what does it do?
ALS cannot be "caught" - it is not contagious. In 90% of ALS cases, it strikes people with no family history of the disease. Ten percent of the cases are classified as familial or inherited ALS. It may occur at any age, with the likelihood increasing as people grow older. However, many are struck down in the prime of life. ALS occurs equally in men and women.
Because the disease frequently takes its toll before being positively diagnosed, many patients are debilitated before learning they have contracted ALS. The disease does not affect the senses of taste, touch, sight, smell and hearing, or the mind.
ALS wreaks a devastating effect on patients as well as their families. As they struggle to cope with the prospect of advancing disability and death, it consumes their financial and emotional reserves. It is a costly disease in its later stages, demanding both extensive nursing care and expensive equipment.
Is there hope for people with ALS?
Yes, certainly. Based on recent medical discoveries, drug trials are now underway. Advances in our knowledge about other neurological diseases may also continue to shed light on the cause of ALS and help us find a cure.
What is the incidence of ALS? How many people in Canada are affected?
It is not a rare disease, anyone can get it. It affects about six or seven people out of every 100,000. Over 3,000 Canadians currently have ALS. Two to three Canadians die every day of ALS. Most people with ALS are between the ages of 50 and 75 though there are cases of teenagers with the disease. In about 5-10% of cases of ALS there is a hereditary pattern. About 90-95% of cases are "sporadic" ALS: anyone can be affected. This can occur at anytime within two to five years of diagnosis.
What is the average life expectancy?
This is between two and three years for the newly diagnosed person. However, it is important to understand that improved medical care is resulting in longer and more productive lives for people with ALS. Twenty percent will live more than five years and up to 10% will survive more than ten years.
For further information: <http://www.als.ca/alsWHAT.htm>
By Ricki-Ann XXXXX
My name is Ricki-Ann XXXXX. I am an American Citizen with Canadian roots. I began to do my family history as a way to relieve stress and became addicted to it. Through access to Canadian records, particularly census records, I am able to trace my lineage further and further back. The census records provided me with a wonderful starting point from which I have gathered much information about my family's heritage and history.
I have also uncovered information about medical causes of death of several blood relatives. It seems "cancer" and/or "cancer of the breast" are a lot closer to home than I ever thought.
This information scared me, but prompted me, at the age of 32 to get my first mammogram, when under normal circumstances it isn't even suggested until after age 40. By age 40 it may have been too late. There were abnormalities in the mammogram.
I now go for follow-ups every 3-6 months at my physician's request to track any changes, and keep ahead of the "abnormality".
If I had never found my great great-grandmother's name, I would have never found the names of her family, or theirs, or the "abnormality".
I am deeply grateful to access of such records as census information, and truly believe it may just save my life. Breast cancer does "run" in my family, there is some genetic link, and now I am aware. Awareness is half the battle.
Preventing access to such records may prevent others from the advanced warning that I received. That would be tragic.
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Until next time. Happy Hunting.
Gordon A. WATTS