Eiche fam

I am very aware of the potential for ableism, since I, an able-bodied person, write about my disabled daughter. I’ve been called out on referring to Namine as being “disabled” and “handicapped” as opposed to the supposedly more politically correct “differently abled” or “handicapable.”

I’ve never been one for the more socially acceptable terms, preferring instead to be direct and honest. There have been times when I have been ableist, and I strive to do better, to be better. I strive to learn from my mistakes, hoping for forgiveness from the ones I love. My goal is, above all else, to be a good example for my daughter. Our life together is a constant learning experience, for all of us.

That said, I think labels are important. Labels do not define a person, but they can help communicate, as a starting point if nothing else, something important (and sometimes crucial) about a person. And since we’re being frank, my daughter does have “special needs.” She needs a wheelchair to get around; that’s not a normal need for children. “Special needs,” as an overarching term, can communicate quickly that a certain individual needs more than would otherwise be typical. (This would be especially useful when dealing with invisible disabilities.)

However, here I would stop and caution moderation. Simply labeling a person “special needs” and stopping there would be just as damaging as refusing to use the label at all. In fact, that’s what Namine’s preschool did, much to our horror. Namine has physical disabilities, not cognitive ones; the school, however, simply labeled her “special needs” and grouped her with the rest of her special needs classmates, all of whom were cognitively disabled students. (This was a great hindrance to Namine, and we spent much time undoing the damage done by the school until pulling her out to teach her ourselves.)

But then we have the opposite end of the spectrum. When Namine was three years old, her plastic surgeon, Dr. Denny, pushed for her to be categorized under the diagnosis of femoral facial syndrome. Up until that point, Namine had been diagnosed as having three primary birth defects: double inlet left ventricle heart defect, caudal regression syndrome, and Pierre Robin sequence. The new diagnosis of femoral facial syndrome addressed the physical effects of all three of these defects, and would (we were told) allow doctors to have a better immediate understanding of what was atypical about Namine’s physiology.

tl;dr Namine gets a new diagnosis so that new doctors can have a better idea of what’s wrong with Namine’s body.

But the problem is that when no doctor has ever heard of femoral facial syndrome, it’s not helpful at all. Now we have to explain what that is, as well as whatever else we happen to be in the hospital for. (Besides, Namine’s file is thicker than a dictionary. No single diagnosis would ever be sufficient to explain all that she’s been through to get where she is today.)

I can only conclude that while labels are important, it’s crucial for two things to always be true. Firstly, a person cannot be defined by one, or any, label. They are more than that, and they deserve to be seen as such. Secondly, the label must be recognizable, otherwise it means nothing.

Coming back to my starting point, the label of “special needs” is a universally recognized one, albeit extremely generic. That’s both good and bad, for equally important reasons. It’s good because it can communicate immediately that something needs more attention than normal, but it can’t stop there. The bad is that it can cause individuals to be grouped together, even when it makes no sense to do so. To avoid that, we move past the label.

Any label is merely one facet of many that describes a person. They all are important, but the person him/herself is most important of all.