by Gord Kyle
The opening phrase in Community Living Ontario’s goal statement is “that all people live in a state of dignity.” The inclusion of the concept of dignity as the foundational phrase in the goal of the association indicates its centrality in all the work that we do. Of course, recognition of the value of ensuring dignity is not unique to Community Living Ontario but is a widely shared value that guides legal and rights frameworks in Canada and elsewhere. For example, Justice Iacobucci stated well the central concept of dignity as intended by Community Living Ontario in his ruling on behalf of the Supreme Court of Canada in Law v. Canada — a landmark equality rights case brought by Nancy Law regarding access to survivor benefits following the death of her husband. Justice Iacobucci began by referencing the all-important section 15(1) of the Canadian Charter of Rights and Freedoms which deals with the right to equal treatment under the law. He wrote that:
The purpose of s.15(1) is to prevent the violation of essential human dignity and freedom through the imposition of disadvantage, stereotyping, or political or social prejudice, and to promote a society in which all persons enjoy equal recognition at law as human beings or as members of Canadian society, equally capable and equally deserving of concern, respect and consideration.
With respect to the meaning of “dignity” he goes on to say:
Human dignity means that an individual or group feels self-respect and self-worth. It is concerned with physical and psychological integrity and empowerment. Human dignity is harmed by unfair treatment premised upon personal traits or circumstances which do not relate to individual needs, capacities, or merits. It is enhanced by laws which are sensitive to the needs, capacities, and merits of different individuals, taking into account the context underlying their differences. Human dignity is harmed when individuals and groups are marginalized, ignored, or devalued, and is enhanced when laws recognize the full place of all individuals and groups within Canadian society. Human dignity within the meaning of the equality guarantee does not relate to the status or position of an individual in society per se, but rather concerns the manner in which a person legitimately feels when confronted with a particular law. Does the law treat him or her unfairly, taking into account all of the circumstances regarding the individuals affected and excluded by the law?
In these few lines, Justice Iacobucci captures many of the central values that Community Living has evolved and used as the basis of its advocacy over the past seven decades. Our work has focused on enhancing dignity by being “sensitive to the needs, capacities, and merits of different individuals.” Our work has likewise focused on ensuring that people are not “marginalized, ignored, or devalued,” which are conditions that “harm dignity.” Justice Iacobucci also acknowledges that dignity results from how a person “feels” or perceives his or her treatment in society. Promoting self-advocacy has been a key strategy in ensuring that we clearly understand how people feel about the way they are treated by society.
When institutions were created in the mid-19th century, they were intended as a mechanism for enhancing dignity for people who had an intellectual disability. After all, they had to be better than the less enhancing alternatives that existed at that time, namely poor-houses and prisons. Nevertheless, they ultimately proved to be extraordinarily dehumanizing and inflicted physical, psychological, and spiritual injury on those who were incarcerated in them and on their families. Our history, with respect to how society treats people who have an intellectual disability, has been one where, too often, our efforts to enhance dignity have resulted in stripping people of dignity, efforts to protect people have caused harm, and efforts to help people contribute to society have isolated people from their family, friends, and neighbours. The work of our movement has been to draw attention to this history and to begin to find a new path forward that ensures that all people live in a state of dignity.
How people are depicted
Community Living Ontario from its very early days understood that to enhance dignity, we needed to pay close attention to how we depicted people who had an intellectual disability. For example, in 1963, the theme of the association’s annual conference and annual general meeting held in Kingston was “Full Community Citizenship.” The conference content addressed the growing concern that full citizenship would never be achieved so long as the movement based its appeals to the public on providing help for “pitiful” children. At a time when other disability organizations were cashing in on public sympathy derived from images aimed at eliciting pity (e.g., Easter Seals’ Timmy campaign, Jerry Lewis’s Telethon Kids, etc.). Community Living Ontario understood the negative consequences that such a strategy would have on how society perceived people with disabilities.
This understanding in fact came long before 1963. In 1956, the association successfully advocated to stop the use of a film depicting children who had an intellectual disability as being helpless and grotesque, which was developed to raise funds for the extension of a privately owned residential program. While that advocacy was aimed at the misguided fundraising efforts of another organization, Community Living Ontario attempted to adhere to the principle of positive imaging in its own fundraising. In 1961, the Board established a policy that images and messages depicting people who have an intellectual disability as objects of pity were never to be used in the association’s fundraising campaigns. This was a potentially costly policy given the popularity of such messages at that time and given that the association was heavily involved in major fundraising efforts. For example, in 1961, the year the Board passed the policy, the association undertook an 18-hour telethon that raised $200,000 (about $2 million in today’s dollars). The policy prohibiting the use of messages of pity had the potential to be a very costly one, yet our work in promoting citizenship for people required it.
Community Living Ontario has also been very attentive to the labels that it applies to people with disabilities for whom the association advocates. In 1963, the local association in North Halton became the first to change its name from the Association for R——- Children to the Association for the M—— R——-, a change that was adopted by the provincial association in 1965. This change was made in part to reflect the changing target audience of the association, as it was increasingly supporting more adults. More importantly, it was a move that recognized that adults who have an intellectual disability were frequently at risk of being considered perpetual children and that the name of the association would contribute to this public perception and cause harm to people. This change again had the potential to put at risk the fundraising efforts of the association given that it was commonly far easier to raise funds for children than adults. Because of this, the decision to change the name was not supported by all members.
The association struggled with the issue of medical labels throughout its early years. In 1964, a resolution of the association’s membership established that in the future, the terms “mongoloid, mongol baby, etc.” would be referred to as “Down’s children” or “Down’s condition” — for the doctor who first described the condition. While that position is no longer present in our statement of policy given the later evolution of our thinking on the matter, it reflects the association’s effort to be sensitive to language and our willingness to change in order to avoid harming people.
While we were sensitive from our earliest days about potentially harmful language in our advocacy, it took until 1980 for the association to strike a task group to consider a change to the association’s name to eliminate the R-word. It took another seven years before we dropped the term and adopted Community Living. The change was made only after much advocacy by People First Ontario and was intended to reflect the aim of the association without imposing a harmful label. Again, concerns were raised about the impact of this change on fundraising efforts, and despite wide support, not everyone agreed with it.
Following the name change in 1987, the association eventually discontinued any future use of the R-word. In recent years we have been careful only to use the full word when making a historical reference, such as referring to an early version of the association’s name or the title of a document of government policy from the time when the word was in use. In recent years, advocacy by people with disabilities to end the use of the word altogether has continued. In September 2019, members voted to have the section of Community Living Ontario’s bylaws that listed the previous names of the association stricken. This was a change recommended by the Council and endorsed by members. Readers will notice that, out of respect for that advocacy, I have abbreviated the R-word anywhere that it is used in the 70th celebration history documents even where it is a historical reference.
In the early 2000s, Community Living Ontario, echoing changes by our national and international partners, switched from using the term developmental disability to intellectual disability. This change was made in part as it was felt that “developmental” referred to the developmental stage of childhood and might imply that people with the disability did not progress beyond that stage. In other words, as was the case of our name change in 1965, we wanted to avoid adults being perceived as permanent children. The use of the term developmental disability has slipped back into usage in recent years. Some of our allied groups, including autism advocates, have argued that developmental is a more accurate term describing the disability shared by some of those they advocate for.
It is in fact not only the R-word that has been removed from common usage. As we struggled to find a word to replace the R-word back in the 1980s, the term “client” came into common usage to refer to people receiving support from local associations. It was adopted initially as a respectful term indicating a contractual arrangement between a person and an organization that they had sought out for assistance. Eventually, however, the term simply translated into a proxy for the R-word and people with disabilities campaigned to end its use.
The association has also struggled to find images that conferred dignity and do not perpetuate harmful stereotypes. The original logo of the association, known as the “broken heart,” showed two forlorn faces of children embedded in a broken heart symbol and accompanied by the phrase “a hopeful heart.” That logo was replaced in 1963, as part of the association’s effort to move away from images of pity. The new logo was a graphical representation of a big person holding the hands of and supporting a small person. The new logo played into the message of the perpetual child in need of help. The hand-holding logo was eventually replaced in 1988, following the name change, by the “starburst” logo that is used today. While over time people have attributed certain meanings to the starburst logo, suggesting, for example, that it is intended to show directionality, the logo was intended to represent no such thing. It was originally adopted to break free of any meaningful representation given concerns about earlier logos. The aim of the new logo was simply to provide an image that would become associated with Community Living without conferring any message or intention.
We continue to evolve our thinking and our actions with respect to how we view and describe people who have an intellectual disability. People who are the target of the various labels outlined above have argued to simply be acknowledged as people or individuals and referred to by name. We should all endeavour to respect this request to the greatest degree possible. Given Community Living Ontario’s role in advocating for social policy change, however, we find it impossible to avoid using some form of description of the population we advocate for and regularly rely on labels. Our challenge will always be to continue evolving the language and images that we use with an aim to convey the highest degree of dignity that is possible.
The issue of dignity is not only about how people are viewed and described by society. Living in a “state of dignity,” which our goal envisions, is reliant on many other factors. The issue of dignity is, in fact, embedded in all the work of Community Living Ontario. It is highly unlikely that a person will experience a sense of dignity if they are excluded, poor, living in unsafe conditions, or has no control over their life. Addressing such concerns has been and always will be central to our work.