GUEST OPINION | Listening beyond labels

A friend of mine recently sent me a link to Disability Scoop (www.disabilityscoop.com), a website devoted to stories from the world of disability.  The stories are interesting enough, but the comments posted by readers are really intriguing. In example after example from recent editions, an article sets off a storm of comments from people who share their sense of outrage about injustices inflicted whether purposefully or inadvertently on people with disabilities and their families. The more you read, the angrier you become.

There is, for example, the story of the boy with cerebral palsy who is denied first communion at his church because the priest has decided that because of his condition the child could not possibly have “sufficient knowledge” of the religious basis of the sacrament of Holy Communion. The child instead is offered the sacrament of the Anointing of the Sick. “That is the anointing they give you before death,” says the boy’s grandmother.  “That was very offensive.”

The readers agree. “A total disgrace,” says one who thinks the priest “should be ashamed of himself.” Another reader recalls that his son who now lives in a group home was denied communion despite appeals to the Cardinal because the boy refused to wear a suit. Yet another describes how so-called “normal” children are able to memorize their catechism and “parrot the right answers” but does that really mean they understand in their heart what they are doing?  Most readers agree with the post that suggests “this priest should be tossed out on his cassock.”

Except for the mother who finds her daughter with Down syndrome “to be much more in tune with God than I will ever be.  There is a special innocence and uncompromising faith that my little one ... is blessed to possess.” Looking at the story from the perspective of her own child’s purity, this mother advises us to let it go, to focus instead on the child rather than the oppressor.

Or the furor over Lady Gaga (of all people) who thoughtlessly used the word “retarded” in a magazine article, then issued a clumsy apology on PerezHilton.com that only added fuel to the fire. This unleashed a torrent of comments about holding celebrities accountable and about “all the other disgusting, revolting, and offensive things” Lady Gaga does for a living. It made other readers think of the way Sarah Silverman and Dana Gould are actually embraced and celebrated as spokespeople for the disability community in Los Angeles despite continuing to “spew their hate” for people with disabilities in their comedy routines.

Except for the writer who obviously speaks from her own personal experience. “The best way to fix the problem,” she says, “is to change peoples perception of the people so labeled.” She goes on to recommend that “we do this by setting good examples, and showing people that we are more than just the “R” lables we were given as kids. I know I’m not perfect,” she continues, “and when I am honest with myself I know I need people to be willing to forgive me when I make a mistake, if I am not willing to forgive others how can I expect people to forgive me?”

Or finally the report on a recent study that shows mothers of children with autism suffer stress levels comparable to combat soldiers. By a very wide margin this article is the website’s most-read item. It elicited scores of postings from mothers feeling validated by the study, from fathers feeling offended for having their stresses and contributions ignored, from a soldier feeling disrespected for being compared to mothers, from people worried about the campaign of “FUDD (fear, uncertainty, doubt, and dread)” they allege is being waged by the “burgeoning quack autism ‘treatment’ industry.”

This study obviously touched a nerve in a great many people who live with the experience of autism and other developmental conditions.  Yet of all the posts the one that touched me the most comes from a woman who herself has autism. “Hasn’t anybody looked at the stress levels of us folks who actually have the conditions?” she writes. “From what I observe and experience, I believe that we folks on the spectrum have even more and higher stresses than our parents.”

What I find so striking about these exchanges is the wisdom offered by people we so often label as “disabled.” The pure faith of a child, a lesson about the power of forgiveness, a reminder that having a developmental condition isn’t easy. The richness of these insights is yet another reason to look beyond labels to the power of inclusion.

Tom Everill is the President & CEO of Northwest Center. Contact him at inside@nwcenter.org.

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