Shared Vulnerability

Vulnerability is real for all of us. Yet, this hard truth of life is magnified for citizens marginalized by society. Recently, the media showcased the loving gesture of an Alberta father who bought a home for his adult son who has Down Syndrome. His initiative garnered significant attention, imprinting on the hearts and minds of citizens and politicians alike.

Accolades flooded from political and community sources, but the voices of dissention spoke up too. Rooted in institutional living, this spruced up community version made sense—at least on the surface. Perspective is everything.

Scratching below the gloss of a feel good story, the community rub becomes clear. This house is in essence a group home—a well-intended collective of adults with developmental disabilities. Life implications are far reaching for its residents, with tentacles stretching beyond long-term reliable housing with a built-in support network.

This readily offered cookie cutter approach to adult living smothers individual growth and inhibits natural community connections. Disability captives are left in the wake, stifled by rules, schedules and safe choices. Sacrificed at the altar of protection, they become programmed spectators in life, watching real lives unfold around them. Operating within an autonomous unit, disconnected from the fullness of the broader community, shrinks one’s world and increases vulnerability.

Vulnerability and judgement are constant companions of individuals with disabilities and their families. My intention is not to skewer a loving dad for his choice. Care and protection of his cherished son are hardwired into him. His deep-rooted concerns and good intentions resonate with me. I do take umbrage with the societal guidance that influenced him down the slippery slope of special living versus typical community living. Any perceived specialness is veneer thick at best.

From the beginning, families with vulnerable members are weighed down by low societal expectations. They are discouraged from being “sensibly unrealistic,” a positive approach that focuses on capacity, connection and contribution—the typical path of adulthood. Understandably, families often hesitate to go against the grain, trapped by society’s focus on safety and protection. Reaching for a life of possibility requires ongoing bravery, support and understanding. Yet families are frequently offered sympathy, judgement and advice instead. Surrounded by the mantra of being “realistic,” it’s easy for families to acquiesce and plan within the stifling confines of disability—a deficit based approach to life. And the perpetuation of segregation continues.

When most kids leave the security of the family nest, adulthood awaits, brimming with opportunities…and yes, risks. The continued endorsement of an outdated support model for adults with developmental disabilities is reminiscent of the “separate but equal” justification that once masked society’s segregation approach to education for people of colour. Segregation in any form divides and weakens us as individuals and a society.

Endorsing separate but equal as an approach is so outdated that even saying words sounds ludicrous. Yet the practice continues, silently supported by society. Untouched by the realities of disability, it’s easy for well-meaning people to believe the rhetoric that “our communities welcome and value all citizens.” In reality, we need people to support inclusion, endorsing action over rhetoric. Focusing on what binds us and embracing diversity are essential to addressing the real vulnerability that touches every life. My vulnerability, contributions and interconnectedness with a diverse community make me a better person. Is that something that anyone should be denied?

Susan Dunnigan

November 2020