It would be good to know how the nonsyndromatic intelllectual disabilies are diagnosed. That would help us decide whether we are dealing with a real problem or simply a family being wrongfully painted as a bunch of miscreants.

What if a couple conceives a baby in order to obtain matching marrow for another child; and what if amniocentesis shows that the tissue of the fetus is not compatible for transplant? Does the couple abort the fetus and then try again? Says Dr. Norman Fost, a pediatrician and ethicist at the University of Wisconsin: “If you believe that a woman is entitled to terminate a pregnancy for any reason at all, then it doesn’t seem to me to make it any worse to terminate a pregnancy for this reason.”

The “for any reason at all” is an attempt to echo the most liberal views of abortion, in fact pretty much no one endorses that conclusion in full generality: do pro-choicers really think that you can terminate simply because the fetus is, say, female, or in order to feed the family pet the aftermath? (Sorry if you’re reading this over breakfast.) The false universality here makes it seem easier to defend selective abortion than it in fact is, an issue important in thinking about disability, since that’s the developed world context in which selective abortion most clearly arises.

I’ve dug through the existing archival work on the Beulah Home – some of this information may be of interest to you. The BH’s records, including names and dates of women who were clients, is in the Provincial Archives of Alberta in Edmonton (file GR1978.0050), but all identifying information is protected under FOIPP, so it would be very difficult to track down a specific individual. If you want more general information, you can ask archive staff for files PR1993.0359 and PR 1971.0047.

From my reading of the general files, which contain no identifying information on the women, I can tell you a few things:

Beulah Home was founded in 1912, as one branch of the Beulah Rescue Mission, which operated three other sites in what was then downtown Edmonton. The whole operation was run by the Edmonton Evangelical Association, an EXTREMELY religious Protestant organization. The Home was founded in response to concerns that young women who found themselves “in trouble” would be rejected by family and polite society and would turn to prostitution. BH was located on what was then the very outskirts of the city, on what I believe is now 137th Ave, in order to keep these women away from the “temptations” of downtown.

Records from the early years describe the women as “lost souls” and as “no more than children themselves”. The staff placed a tremendous emphasis on “saving” their clients and “rescuing” them from the path they were on, but the general tone of these statements is more of pity and maternal compassion than of punitive judgment, as was the case in many other homes for unwed mothers of the time. The clients were portrayed as victims of unscrupulous men, who strayed from the path of virtue because they did not have enough spiritual strength to withstand temptation. The literature produced at Beulah stresses the importance of setting girls on the right path, so that they could move on from the unplanned pregnancy which brought them to Beulah, and have a chance to someday become “legitimate” wives and mothers. Marriageability was the ultimate goal, and the newsletters and fundraising materials contain pictures and stories of former clients who returned with their husband and (legitimate) babies to visit the home, as well as copies of wedding invitations sent by former clients.

The majority of the clients in the early years were young unmarried women who were working in Edmonton, with a few younger woman from outlying rural areas. Although Beulah Home literature describes them as “child-mothers”, from the one record of ages I was able to find, only 20-25% appear to be under 18. In the early years, they were mainly white, Protestant and English-speaking, although in later years more women from non-English backgrounds turned up. The Catholic church operated a similar home run by the Misericordia Sisters, which I assume is where most Catholic women went. The Beulah Home was supported initially by donations from wealthy upper-class women of Edmonton, who created the Dorcas Society to co-ordinate fundraising for the home; and later by a combination of private donation and government grant.

The Beulah Home was staffed by a matron (who was expected to fill the role of mother-substitute to the clients), one or two housekeepers, and one or two nurses. One matron, Mary Findley, stayed for nearly 50 years and appeares to have been regarded very affectionately by the women who passed through Beulah. There are reports of some women staying on at

In the early years (through 1930s), the home also operated as a sort of boarding house for babies, where women who had given birth there could board their babies until they were able to take the babies home with them, if they chose not to place the babies for adoption. Some babies were boarded for as long as two years, for a monthly payment. In later decades, however, much more emphasis was placed on adoption, with babies boarded only until adoptive families were found. The Beulah Home staff and donors advertised aggressively for adoption, including advertisements in the Edmonton Journal encouraging families to “adopt a baby for Christmas” in the 1940s. I have no evidence that women were actually coerced to place their babies for adoption, but I imagine the covert pressure to place the babies was pretty strong. A woman who was raising a child born outside marriage would not be as marriagable as one who had no child and no evidence that she had “fallen from grace” in the past.

I didn’t find evidence of much oversight or screening of adoptive families – it appeared to be quite a casual process. News reports from the time speak of a tremendous demand for “Alberta babies”, from Alberta farm families who wanted extra children and from Americans, who came up and took babies back home. There was a scandal in 1948 concerning Alberta babies being “sold” to American families, with payments going to the provincial officials in charge of children’s services, and although the Beulah Home was not directly mentioned in any of the materials, from that point onwards the administration appears to have tightened up its scrutiny of prospective parents, giving priority to Canadian parents who had been screened and put on a waiting list.

The religious element diminished markedly in the 1950s, with more emphasis placed on providing educational opportunities for the women in the home, such as high school correspondence courses and other forms of training, rather than (or in addition to) endless religious services. Marriageability also receives much less attention than general preparation for adult life.

I don’t have much material from the 1950s, the decade of interest to you, but I do know that over the course of the 1950s fewer and fewer babies were boarded in the homes for extended periods, and more and more were adopted right at birth, and pregnant women stayed for shorter and shorter periods. In 1960, the old Beulah Home closed and a smaller one opened where women could come right around the time of birth. Sometime in the late 1970s/early 1980s (exact date is not clear), the Beulah Home ceased operation altogether.

Indeed, there is an enormous chasm between ratified rights and the current reality of our medical system.

In one of our court hearings, (Annie Farlow) I was going on about the Convention of the Rights of the Child and the obligation of state parties to provide and protect those rights. Here we are, alleging the most egregious of denials, the denial of life, and we are in a legal system that appoints such little value to the life of a disabled child with a shortened life span that there isn’t a lawyer in the country that would take it on contingency.

The Judge interrupted me and asked what the Convention on the Rights of the Child had to do with the situation. I find that statement to be very telling.

I have made a great effort to understand the system from the front line perspective. I asked one intensive care physician who writes on the topic of futility and priority setting, “What about Human Rights?” The idea of human rights was brushed aside quickly and easily with his response, “Oh yes, but they are not absolute.”.

An even more insightful conversation was with a physician who told me that her hospital had developed guidelines that restrict admission from children with “certain cognitive disabilities.” I blurted, “But that’s a human rights violation!” and the response was, “I know and I don’t agree with it.”

I would conclude that those in the system realize that they are violating rights, but that is just the way it is. It seems to be what the system expects or demands as beds are continually cut and physicians are left to make choices.

My position is that if our country is so impoverished that we create policies that discriminate from certain people on the basis of disability (not medical futility), then we have to be very open about the development and implementation of them at the very least.

The existence of Human Rights and the atrocities that led to the creation of the Universal Declaration of Human Rights (a beautiful document) cannot be abandoned in incremental denials as we experienced.

The significance of our issue is that we believe that our rights to be informed and to make informed decisions were blatantly violated in a covert manner. To us, a major line that was crossed. If this right is taken from loving, omnipresent parent who simply want to provide medical treatment irrespective of disability and who have a very good relationship with the doctors, then who is next?

It is certain that genetic conditions such as trisomy 13/18 are the leading edge of genetic discrimination. As long as infants with these conditions are treated appropriately, in accordance to existing health care laws, then all other newborns with conditions related to disability will also be treated appropriately.

We have discovered government-produced training materials that dehumanize infants with malformations by placing them next to a monster and a mermaid. We have discovered a government document that specifically excludes certain life-saving at-home equipment to infants in need IF they have a pre-existing condition. (how many pre-existing conditions can a newborn have?)

Finally we have discovered that there is no place to complain or shed light on these discoveries. We believe they are blatant violations of ratified conventions….but who cares?

Thanks for sharing the content; it made my day!!