In a tribute to the late Jean Vanier, Margaret Somerville refers to his memoir in letters. She writes:

“Jean Vanier’s letters gently show that among the many gifts disabled people can offer us are lessons in hope, optimism, kindness, empathy, compassion, generosity and hospitality, a sense of humour (balance), trust and courage. But, as Jean Vanier recognizes, to do that they must be treated justly; given every person’s right to the freedom to be themselves; and respected as members of our community. That requires us to accept the suffering, weakness and fragility we see in them, which means, as Jean Vanier emphasizes, we must first accept those realities in relation to ourselves. Most of us find that an enormous challenge and flee.”

I could think of no better way to open my formal contribution to this Colloquium than those words. Neither my late husband, Fred, nor I, could have lived with ourselves had we flown from that challenge when our son, Ian, our only child, was born 55 years ago with some now corrected physical disabilities and what has turned out to be a very severe intellectual disability.

We soon became conscious of those gifts to which Jean Vanier refers. Ian offers such lessons to the world at large on a daily basis. I suspect that Ian, himself, has no understanding or recognition of his pedagogical skills or of their effect on others but, even without the capacity to speak, read, write or understand unfamiliar words or situations, he is a skilled and persistent teacher.

However, to learn from Ian, one has to be willing to believe that he has something to say. And therein lies the problem. Justice, freedom to be who we are and respect as equals are “givens” for most of us. They are not something we must constantly seek out, fight for or defend day by day. Those “givens” are not there for people such as my son!

Recorded history suggests it was ever so. Suffice to go back a mere hundred years for an example: that keeps us within the lifetime of Ian’s Dad who, were he still with us, would be fast approaching 101.

In 1919, Mr Justice Frank Hodgins presented his commissioned Report to the Ontario Provincial Parliament on The Care and Control of the Mentally Deficient and feeble-minded in Ontario.

Justice Hodgins called for the immediate segregation from the community of any offspring of those identified as “feeble-minded,” noting the “terrible menace to the public” they represented. He shared the commonly held belief that not only was so-called “feeblemindedness” hereditary, it inevitably implied a proclivity for criminal behaviour and promiscuity. He opined that women so labelled should be “permanently deprived of their liberty” for, “with animal passions fully developed, and the sense of propriety and responsibility dwarfed, with deficient will power, these unfortunate women would remain beyond the power of redemption if left at large.”

What if they wished to get married? This supposed menace led Justice Hodgins to recommend new legislation prohibiting marriage of any “mentally defective or feeble minded” person and ensuring imprisonment of anyone knowingly and wilfully marrying or having “carnal connection” with such a person. Obviously, the fundamental right to develop natural, loving relationships was to be denied to such people.

The prejudices and lack of respect reflected in Judge Hodgins’ report were not restricted to his era. They continue today. My son’s life experience provides numerous examples of shockingly disrespectful statements and events, some in a medical context, others in broader social contexts.

Ian was three weeks old before I recognised the insults to which both he and I had, already, been subjected. Ian had set his own timetable for arrival and did so three weeks earlier than expected, late in the evening before my obstetrician was to take an early morning vacation flight. I appreciated that he came in to deliver Ian but he left immediately.

Three weeks later I saw him again. He greeted me by saying that he had been “so surprised” when I had given birth to “a Mongolian idiot!” I was shocked! With only a three-week experience in the disability world, I knew that such terms were no longer acceptable. (However, I must say that, with the exception of that one ignorant obstetrician, Ian, Fred and I have had the benefit of the care and concern of some wonderful doctors.)

That experience made me think! Why had Ian been whisked away before I had chance to see him face to face? He had been placed for a few moments in the curve of my arm as we were quickly wheeled into the recovery room and immediately separated. I had seen something from that angle, but what? My family doctor arrived and told me there were problems, the tied tongue which had been addressed, the club foot which would require medical intervention and “other things that we’ll talk about later”. I spent a sleepless night wondering what I had seen that had not been explained, what were those “other” problems?

The moment I saw my baby the following morning, I knew. He had Down syndrome. The nurses were forbidden to talk to me except to say I was not allowed to breast feed as intended and there was no point in arguing as I had already been given medication to stop production of milk. No consultation, whatsoever! I felt helpless!

As soon as my husband arrived to visit I sent him to our family doctor not only to confirm my belief about our son but also to ask what was going on!

Although I knew he would be ineligible under laws of the time, when Ian reached school age I phoned the school board and asked about the process were there to be a child of school age not attending school. The answer was “when we hear about it, as we usually do, we approach the family.” “Well”, I said, “I have never been approached and my son doesn’t attend school.” “Madam, your son must attend school!” was the instant response. I replied that my son had Down syndrome and was immediately cut off by the comment: “Oh, well, if he has a disability we don’t take any action! He doesn’t have to go to school!” Despite already knowing, the arbitrary and disrespectful dismissal was yet another shock!

In the mid 70s, Ontario’s Minister of Education and other Cabinet members were holding public meetings around the Province. I attended with other parents of children excluded from school. By chance, two of us met the Minister in a doorway. I seized the opportunity to tell him that we were protesting the exclusion from school of our children with severe disabilities. His response was instant, “Surely you don’t expect us to be in the business of building hospitals for the vegetables — or whatever you call them!” This time, I was ready. “Well, Minister,” I said, “we certainly don’t call our children ‘vegetables’! We call them our school-aged children and we expect them to be in school!” He turned and walked away without further comment.

The most hurtful example was at the funeral of my husband’s oldest and closest friend from high school days. At the graveside, Ian and I were introduced by Fred to a doctor educated in Canada but practising in the US. He was the son of another of their high school contemporaries. Ignoring Ian, when introduced, the doctor asked, “How old is he?” Somewhat taken aback, we answered automatically. “Ahh!” he responded, “Just before amniocentesis!”

There seemed to us to be no limit to the disrespect. The physical and sexual assaults Ian has experienced in his day programmes and the lack of responsibility of those people paid to provide for his care at those times is hardly believable. Equality, in addition to respect, implies equal justice. Where is the justice for those who cannot speak for themselves? There was no justice in Ian’s experiences of assault, physical and sexual, and only partly because some perpetrators also had intellectual disabilities. That was not always so.

In his early teens but still in diapers, Ian arrived home from his day programme with a lacerated penis, still bleeding. No staff would admit to awareness of the situation yet Ian was in a toilet training programme and unable to diaper himself. He had no speech and insufficient manual dexterity to manage knives, scissors or other sharp instruments or even a zipper. Enough said!

The matter of legal capacity and people with intellectual disabilities has been a concern of the Community Living Association for over half a century. We see laws that rely on cognitive/functional tests for legal capacity as discriminatory. Such tests put people with intellectual (cognitive) disabilities in immediate jeopardy of being placed under guardianship from the age of majority, thus losing their status as equal citizens solely on the basis of disability.

The most blunt and graphic description of guardianship I ever heard was in the early ‘90s at a hearing of an Ontario Legislature Standing Committee. Explaining to an Opposition Member the difference between advocacy and guardianship, Trudy Spinks, a senior Government lawyer, said that “guardianship replaces the person!” (Ms Spinks retires in July from her current position as Ontario’s Deputy Public Guardian and Trustee).

Who on this earth wants to be replaced? Although heading to age 92, I have no wish to be replaced should my capacity diminish. Nor did Ian’s dad, nine years my senior, have such a wish. Nor, I suspect, do any of us in this room and elsewhere, wish to undergo a transformation of social status to legal non-personhood and its almost inevitable lowering of equal respect. Such social diminishment is particularly detrimental for people already struggling to be accepted as equals.

So why would we assume that people such as my son or people whose cognitive skills are diminishing, would wish to be demoted to that status? I can only assume that it truly is, as Jean Vanier suggests, because we, society at large, consciously or otherwise, do not always consider such people as deserving of equal justice or even of equal respect.

It was that lack of respect that galvanised my efforts to bring together people who might seek a solution. In the mid 80s, provincial governments were reviewing their guardianship laws in light of Canada’s new Charter of Rights and Freedoms. My provincial Association’s lawyer served on the Ontario Government’s Advisory Committee. Despite significant modernization, nothing in the proposed new Substitute Decisions legislation would change the assumption that the Ians of the province needed guardianship.

I wrote a strong letter of protest to the President of the Association. The response was a request that I chair a task force. My fundamental question for the task force was one of respect versus non-respect, why people like me, with presumed capacity, were free to use whatever help we could muster in making decisions yet people like Ian, whose capacity was questioned, had to prove they could make decisions independently without such help. We worked hard.

We didn’t manage to stop adoption of the Substitute Decisions Act. We did get prohibitions into the Act under which the Court cannot appoint a guardian if it is satisfied that the need for decisions to be made can be met by alternative means that don’t require a finding of incapacity and are less restrictive than the appointment of a guardian.

We can’t change the nature of guardianship or its history which dates from Roman Empire times but the nature of society can be changed. Guardianship belongs back in that earlier world when Justice Hodgins could talk with authority about the need for the “care and control” of people who, like Ian, had intellectual disabilities. We no longer live in such a society.

If we really think about it, we can see that there is no place for guardianship in a society that says it believes in equality, justice and respect. It just doesn’t fit! In today’s society, we cannot simply look for ways to “replace” people if we think they don’t measure up to our expectations.

Rather, equality, justice and respect call for cooperation and support and for helping each other to share the benefits (and the pains) of society. And that is what supported decision-making does. It is what I want should my cognitive capacity be diminishing. I suspect that it is what most of us who can imagine a future would want. We now have to provide it.

Audrey Cole has deep roots in Canada’s Community Living movement. The birth of a son with Down’s syndrome energized her advocacy in human rights, values and ethics and the social well-being of disadvantaged people. She shares the concern of the disability rights movement that the incessant call for assisted suicide sends a cruel but implicit message that life with disabling conditions is a life not worth living.

This is the text of a talk that she gave last month in Quebec at the 9th International Colloquium of the  International Association of Catholic Bioethics on “Caring for Persons with Compromised Agency: Navigating Complexity”.  

Audrey Cole has deep roots in Canada’s Community Living movement. The birth of her now 54-year-old son with Down’s syndrome, energized her advocacy in human rights, values and ethics and the social...