An Invisible Separateness

Our culture has introduced the idea of inclusion (age appropriate participation with our peers) for years. Laws support it, schools teach it, and many advocates work tirelessly to bring the concept of disability awareness, inclusion, and participation into schools, workplaces, and general communities.

Despite concrete and respectable efforts, access and inclusion still do not necessarily go hand in hand. I may have access to a facility; however it does not mean that I am made to feel welcome, included, or even that I am considered a patron. I have had more than one occasion where health and service providers have said “We don’t serve people like you.”

My walking devices are a visible marker of disability. The devices that support me to move and walk can place me in a category of “other”. Especially when I was younger, the devices put me in a separate but not equal scenario with my peers.

True inclusion in concept creates a culture of belonging. Inclusion certainly begins with physical and architectural access, (e.g. having ramps, flat surfaces, and doors that are easy to open), yet true inclusion by my definition means I am in the middle of the action. That is, directly involved, in the recreation and leisure activities, participating.

Being present but not equal is not acceptable to me. I want to go into a recreation and leisure facility, where I am able to participate and where I see and interact with a mix of young people, professionals, and seniors. The set-up is not one of fixed ratios but one that encourages interaction, playing, and taking part in whatever a person chooses.

In my youth, the venues for inclusion were the lunchroom or gym classes. Even though I was involved, or took steps to ensure my active participation, I often remember eating lunch alone because I did not know how to relate well to my peers and / or they did not know how to relate well to me.

More than twenty years later, I have witnessed youth with disabilities in more than one venue still sitting by themselves as their peers socialize around them. Placement in a physical setting or situation does not mean interaction happens.

By the time I reach my 60’s I would love to see a culture shift, where I am the patron before the diagnosis. I would love to see an end to categorical terms like “the disabled”, which makes me feel like I should belong to a herd of cattle.

Our culture has created varying levels of access but has also created a phenomenon of invisible separateness for people with disabilities. While trends are changing, we still have ratios that identify a specific number of youth with disabilities that should be paired with a specific number of youth without disabilities, we continue to have specialized programs, and people who are challenged by differences. How can we move beyond the invisible separateness that continues to exist to create cultures of true inclusion?

This article were originally published in 2011 in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).