Wait for it

tagsI  had the pleasure of attending a meeting recently  where John McKnight was speaking about families as the catalyst for change in their communities.

The organization that hosted the meeting is the Starfire Council and you can learn more about the work that they do here.

I was excited to attend the meeting because I am interested in starting a work that focuses on using the  strengths of people with severe disabilities to facilitate connections and strong social foundations for themselves and the communities they live in.

Our current US administration seems intent on cutting funding for programs that provide supports for people with disabilities. This has created a sense of urgency in me to develop alternative resources for my own children to live a life of their choosing.

Something fascinated me that afternoon at Starfire. We were divided into small groups and when one of the women in our group introduced herself someone asked her if she worked for Starfire. Her reply was “No, I have a son”. Pause. I was still looking at her waiting for the rest of the sentence. I have a son …with a disability, with autism, cerebral palsy, a genetic disorder, something.


The pause was all on me. I have become conditioned to both hearing and saying these descriptors, identifying myself and our family as one who has a child with a disability.

Some people want to self-identify with their disability and embrace it as part of their personhood. Other want to distance, themselves from such words, view them as private. “Mom bloggers” get blasted for oversharing. There is a lot of discourse around language and disability.


When referring to people who are disabled, specifically intellectual and developmental disabilities, the current trend in human services where I live is consumer. I hate that word, consumer. It’s definition lying too close to the ”useless eater” ideology of Nazi Germany for my comfort.



Client, another favored term, seems to afford slightly more dignity but still seems heavy with accusation. A client is needy, a receiver of services, not one who gives back.


I have heard people who express discomfort with those terms use “the individual” in an attempt to be a bit more humanizing, but we all still know to whom they are referring.

Those people. The ones who are different. Other.

There is a need to provide that distance with our language because of the way those people are treated. The atrocities they are expected to endure, from controlling and commodifying their every waking moment to abject neglect, can be justified or somehow made acceptable if they are “differently abled” and their needs are not like my own, their needs are special.

Out in the real world, these lingual barriers can dissolve. We can share an interest or a passion without needing to refer to someone as a consumer, client or individual, because we can be a classmate, coworker or friend.  All people need love, acceptance and belonging, things not found in the world of paid services, but amongst the everyday social fabric of normal life.




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