What Should I Say? Part 2

This is a part of a series called That’s a good question designed to provide answers to questions I commonly receive from interested individuals. I do not claim to have all the answers, nor do I attempt to provide concrete answers to every question. However, I do hope to provide opportunities to rethink existing questions.

That’s a good question

It pains me to hear cliched responses to Summer’s (my daughter) legitimate struggles as a result of her being “differently-abled” or “handicapable.” It further pains me when someone tells me in response to a voiced frustration of mine or a struggle that I might share that “all kids are [blank],” (fill in the blank with your favorite challenging behavior), they are attempting to minimize my hurt, my suffering, my pain, and my journey. In truth, I see those individuals as not really trying to comfort me as much as excuse themselves from entering my story and being present. Typically I smile and nod too weak to fight. However, I want to answer with “yes, but your child is allowed to go to church with the youth group,” or “you don’t have to navigate special education or social security or medicaid alongside your child.” Disability scholar and advocate Anjali J Forber-Pratt argues “these euphemisms are doing more harm than good because they reinforce the negative stereotype that disability should be feared. This intentional avoidance of the term disability sends the message that there’s something inherently negative or bad about having a disability.”

This avoidance leads to problems. It minimizes my reality. It scolds Summer, or by extension her parents, for acknowledging that life can be hard when someone doesn’t fit social ideals. 

Summer, describes herself as having “autimism.”  She also identified as having a disability. When I introduce her to a colleague or talk about friends who work alongside individuals with disabilities, Summer will ask, “do they know that I have a disability?”  Regardless of the situation, Summer is not ashamed of labels.  Autism or Intellectual Disability are not labels to be discarded or source of embarrassment. Rather, she owns her identity. She is proud of who she is. She feels no stigma assigned to her diagnosis.  She knows that the significant problems associated with disability are those imposed by others.

In a 2016 NPR interview, disability rights activist Lawrence Carter-Long was asked what people miss when they minimize obstacles and/or disabilities. He argues that “If you ‘see the person not the disability’ you’re only getting half the picture.”He goes on to argue that “…to suggest disability is simply a ‘difference’ and has no impact on a person’s life is a very privileged position to take. Most disabled people don’t have that luxury.” As a result, Carter-Long has developed the DISABLED. #say the word campaign in an effort to promote a dialogue about the need to use the word, own the word, and refuse to stigmatize the word.  

“Well I don’t see Summer as disabled,” well-intentioned individuals might argue. Yet, as Psychologist Erin Andrew, and associates, argue in a recent article in the Journal Rehabilitation Psychology: “These efforts to avoid using the word disability paradoxically reveal actual prejudices and biases against people with disabilities.” They continue, noting that, “The implication is that disability is negative and the individual defies the undesirable stereotypes held by the observer.”

So, while I understand the tendency to avoid disabled realities, it is not helpful. Again, it places the story on the margins. It places individuals like Summer on the sidelines. Her diagnosis becomes something cute and ancillary to the “real” things in life.  Because of that I prefer to avoid phrases like “special needs” and choose to employ person-centered language without avoiding words like disability.

Again, there remains a divide even in disability ministry as to the proper name(s). I don’t think that it makes someone “bad” if we don’t see eye to eye on labels. My hope rather, both last week and this week has been to add a layer of reflection as you navigate this world. In fact, if I have done my job, things are more complicated than they were before. Maybe that is good as complicated forces us to think through things with a slow deliberateness.

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