People With Intellectual Disabilities: Where Are They?

25/08/2016 13:57

Frances Gillet was surprised by many friends and family members at her English residence as they celebrated her 75th birthday on July 27, reportedly making her the oldest woman in the world with Down syndrome. When Frances was born in 1941 the average life expectancy for people with Down syndrome was mid-20s; today it is 60.

Frances Gillet celebrates her 75th birthday (Terry Harris / Geoff Robinson Photography)

Increased opportunities for inclusion and higher standards of care have been important developments for a greater (and longer) quality of life in persons with intellectual disabilities. The advocacy and disability pride movements have brought some of their voices to a higher level of public dialogue and political engagement. However, they still remain one of the most oppressed cultural minorities in the world. Often living at the margins of society, people with intellectual disabilities are facing rejection and structural segregation, abuse and bullying that might often go unreported, and, as recent political news points out, scorn from those that should care for their best interests.

How to move forward and become a truly inclusive and empowering society in which people with intellectual disabilities are finally welcomed right at the center of the social milieu? Of course, there are different ways to make this happen - individually and structurally - but one way might be surprisingly simple and accessible to all. That is, to meet.

It sounds obvious to speak of meeting people. But in this case, unfortunately, it is not. I share life and work with persons that have intellectual disabilities in a L'Arche community, an inclusive reality in which people with and without disabilities create home together and become friends in a spirit of mutual belonging. Together we share meals, outings, rest, and activities of daily life. I have done research with persons with intellectual disabilities during my Disability Studies doctorate. However, when I get out of my little world, I look around and am left wondering: where are the people with intellectual disabilities? Where can they be met?

I still remember one evening some years ago getting back from vacation to the L'Arche home I lived in. Jimmy, a housemate who has Down syndrome, welcomed me back by giving me a big hug and asking me, "Did you miss me?" Did I miss Jimmy while I was away from him? Beyond my own personal response to him and beyond my experience of having Jimmy as housemate and friend, I wonder if society at large even has a meaningful chance to meet people with intellectual disabilities, and therefore to miss them if they are not present.

It is important that we find ways to encounter persons with intellectual disabilities and enter into relationship with them, if they so desire of course, and allow them to reveal their gifts. This is not because they need our pity, but precisely because the wall between the "us and them" should not be. Cultural groups, places of leisure, schools, residential homes, sport teams, workplaces, restaurants, places of worship...these are only some realities in which inclusion can be lived out. Inclusion can be as simple as becoming friends, and doing whatever friends like to do, in the places friends want to be at.

This simplicity of meeting one other, paradoxically, can also lead to a "revolutionary" social change. A society that values efficiency, productivity, and individualism as "the norm" easily rejects those deemed slower, inefficient or needing support. But it is precisely by embracing these latter characteristics - in others, but also in ourselves (!) - that we allow for a new human culture and society to emerge: one that values interdependence, embracing difference and mutual belonging. A society that speaks to the basic human needs we all share as people; a society in which if people with intellectual disabilities were not present, we would know it and we would miss them.