Labeled.

Label: noun

1. A word or phrase descriptive of a person, group, thing, etc.

2. a word or phrase indicating that what follows belongs in  a particular category or classification.

Labels, in the grand scheme of things are a great thing. They tell you how to wash your clothes so they last, how to use a new product, where to keep certain medications in your house, or how long until that yogurt goes bad. When it comes to people we use labels to describe what ethnicity or religion a person is, we use our professional titles (another use of labels) to show our stature in society and our ranking in a company.

In 2009 my son was given the label Autistic and though it was hard to swallow at first, it has proven to be the best thing that ever happened for him. We were able to get him into a learning environment that has allowed him to thrive, and, thanks to that label we are able to better support him at home. Knowing he has Autism (and understanding what that means) allows us to understand all of his quirks and demeanor in a way we never could before. I have to be honest though, when we first found out, I hated that label.

I hated what it meant to everyone else, and what it meant for him. Being Autistic meant that he would face challenges in life that many of us don’t have to face. It meant that other kids would see that he was different and they would in turn treat him different. It meant that in addition to all the other challenges life was going to through at him (puberty, relationships, heart breaks, college, etc.) he was going to have to do it all with a disability.

Disability.

What’s the first thing you think of when you hear the word “Disabled”? The textbook definition of “Disabled” is “a person who is crippled, injured or incapacitated.”

Ouch. Crippled? Incapacitated? I don’t think that my son is either of those things. He is funny and smart and so compassionate. He is anything but crippled. But this isn’t really about my son as I am sure you can guess, it’s about yours truly.

After my last post I got to work figuring out how to get that stamp that says “I need this chair” or whatever else I need it to say. I met with my PCP yesterday who helped me finish up my paperwork for NelNet for my student loans, and she filled out my request for a parking pass to use the handicap spaces.  It was all very productive and I was glad to have it taken care of. Then I left my appointment and I started to realize what she had just signed.

My form from NelNet says that I am ‘Permanently and Totally Disabled’ meaning that I am unable to participate in any financially gainful activities. Now that feels like the description of disabled, and that feels icky. It’s another label that means that in addition to all the other things life will throw at me I get to deal with the challenges that this disease will throw at me too. I don’t like it.

We talked about it a little bit during my visit (my dear friend Riz has been tagging along to some appointments and she just happened to be at this one. This inspires a whole other post we will get to next) and  both Riz and Dr. R. pointed out that these things are here to help me, to make life easier for me. They didn’t define me or change anything in my day-to-day life.

We already knew my son was probably Autistic, but somehow having someone else say it out loud, someone with the power to make it permanent so to speak, made it real. It’s out there now and it can’t be debated or taken back. It’s on his school records and in files in offices in places I haven’t seen and now when people meet him there will always be this tagline that says his disability is Autism.   And like it or not, that will change the way the people who meet him see him, it will change the way they talk to him or interact with him. It changes their perception of him.

I don’t want that for my son and I don’t want that for me. I don’t want people to think of me first as disabled or ‘sick’ and secondly as me. When people meet my son I want them to see his blue eyes and sandy blonde hair. I want them to see how tall he is, and how funny and compassionate he is. I don’t want them looking for the quirks of Autism. Likewise, when people talk with me, when my friends talk with me, I don’t want them to be looking for the Pelvic Congestion Syndrome, the Chronic Venous Insufficiency or the Chronic Pelvic Pain. I don’t want them looking for signs of my back pain, I want them to see me.

I want them to want to talk about my kids and school, or my family and what we’re up to every day. I want to talk about the holidays and how much we hate the cold weather. I don’t want them to be looking for the wince or the deep breath to release my clenched fist under the table. I don’t want them to see the odd way I stand up out of a chair but I do want them to notice that I have a new scarf on 🙂  But how can I ask that of them when I have this label?

But then I think about how the Autistic label has helped my son. I think about all the resources it opened up for us, and how much better it made his life at school, with family and at home. I remember that I still only see that smart, funny, loving boy who comes home every day from school and gives me a HUGE hug and tells me he loves me. I remind myself that it’s few and far between that I see him do something and think to myself  “he is Autistic” but more importantly I think about who he is and how much having the extra help (thanks to his label) has allowed him to be who he is, without difficulty like before and then I am grateful for the label.

So I guess now I have a label too that just helps me take better care of myself, and just like the Autism diagnosis didn’t change who my son was, this label doesn’t change me either. It’s just a reminder to myself that I am not weak or lazy because I can’t run 5 miles on a treadmill or use my vacuum cleaner anymore.  It’s just that those are things my body can’t really do anymore and that doesn’t change who I am at all.  The best part? Now I can sit in that chair. 😉

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