Labels

One of the most challenging experiences I’ve had being Jack’s mom is dealing with the labels that have been used by friends, family, caregivers, and medical professionals.

Over the years, I have heard people refer to my son as ‘Downs’, ‘retarded’, ‘Mongoloid’, ‘special needs kid’, ‘T21’, or ‘DS kid’. Many times, at the moment I’ve said “my son was born with Down syndrome”, instead of his being seen as a person, “Down syndrome” became a label, with a stigma attached to it, and I watched my son suddenly boxed into a one-dimensional definition of who people thought he was.

I find it so dehumanizing when a label is applied to him. My experience has been that the stigma associated with “Down syndrome” hinders any attempt for deeper understanding. It causes people to remain focused on the stigma rather than understanding that “Down syndrome” is meant to identify an aspect of his humanity and what he may need because of that.

We have so many examples of this, such as the psychological-educational assessments required by the school district. It felt like all the school wanted to know was how much additional funding they could get with the hope of being able to hire a support worker who could then also support additional children instead of just the one the funding was designated for.

Or the information sought after by the various organizations he applied to for the services and support he needs for his day-to-day life. All the organization wanted was their completed and signed 15-page document, a document filled with questions that quantify how severely intellectually disabled he is, to check that checkbox so he can get $1000 per month to pay for all his living expenses.

I remember going through those assessments, filling out those forms, a sick feeling in my stomach, trying not to cry, wanting somehow to share a story that demonstrated he was so much more than what that assessment showed, a way to show the depth of his emotions, how he loved dogs, his ability to learn words in different languages, that he liked to play jokes, how he would comfort his friends when he saw they were sad.

The human being, my son, is not just forgotten, he’s not seen. He’s been lost amongst the paperwork, hierarchy, and mired within labels for so long that people have forgotten that he’s a human being as worthy, with just as much to offer, as a ‘typical’ person. More than once I've seen the look of surprise when I’ve offered the opinion about what he’s brought to this world and to the people around him.

It’s exhausting watching people focus only on the label, riveted on the stigma and not the person, my son. It’s so much work trying to educate people, offer a different perspective in a non-confrontational way, with the hope their line of thinking may shift, even a little. Sometimes I’m so tired of this responsibility. I know what I’m describing can be applied to so many other labels and situations. It’s disheartening. When are people going to wake up on their own? When are they going to open their eyes and SEE?