Disabilities are the only thing that affects us all. No matter who you are at any given point in your life, whether it is late in life or early, permanent or temporary, you will face a disability. There are stigmas about disabilities, stigmas about how we feel about the future that someone with a disability will have, both for themselves and for their community.
Nothing has ever given me more joy than watching my son perform and smile.
My son is autistic, curious, smart and funny. He’s all of that and he’s just as important in my life as anyone else I know. I will not hide his handicap. I don’t think that his disability makes anything “less” about him. It is who he is and he gets to define himself how the hell he wants. During his graduation, he and other students defined themselves as graduates.
Too often we ignore what disability is. We’re just saying, “Well, look at the person, not the disability,” but this allows people to give such a negative connotation to the person with the disability. The fact that they are disabled is negative, which means that my son is not “okay” or that he is not worth as much as someone without a disability. Why? Why is that?
I do not know the complaints and the status of everyone around me and do not ask. I don’t happen to walk up to people and say, “Hey, can you tell me your IQ? Did you have an IEP? “However, I did have people come to us in a store who asked exactly these questions. Since my son is largely viewed as Asian in his looks, I remember being approached the question in a grocery store 15 years ago : “Is your son Mongoloid?” I’m even afraid to type that it makes me so sick. I wanted to hit this person, a complete stranger. I just walked away instead.
For the past two years I have dealt with my own disability issues – some temporary, some permanent. In my case, my own disability defined me and I cannot remove it from who I am. This would deny what makes me who I am.
I am a person with a pretty severe TBI. It will always be with me. I can’t change it or change it. I do not deny it; I accept. There are times when I hate it. I am currently writing a hopefully fun book about TBI because the books I read about TBI, at least for me, do not represent my experiences. Sometimes I was overwhelmed by the problems with TBI. There are memories and relationships in my past where my disabilities and their disabilities may have prevented us from understanding each other.
When I saw my son cross graduation, I was reminded that my two sons were graduating without their mother. My youngest had his mother die within a few days of graduation, my oldest two years later.
At first, the realization made me hate and despise my disability, what it is like to be disabled. If I accept my disability, I have to say that pain is something we all experience and that is necessary in life, and suffering is a choice and I don’t have to choose to suffer. I can feel the pain without suffering. This is a human response that happens to everyone, not just those with a disability. Understanding my own disabilities better has always made me a better advocate for my children. I’ve fought for every IEP, every opportunity. Some of these decisions were very difficult, and I didn’t always make friends. Why did I have such difficulty accepting my disability? Because I understood that I immediately thought about how many would treat me as “less than” and that personally I didn’t want to believe that I was disabled.
Support for disabilities is important. It makes sense. It treats and respects the disability. When my friend took pictures of my son, I know that just because of a disability, no one is less loved or less respected. She never says, “Augustus has autism” or “Augustus has bipolar disorder”. She never said to me: “Christopher suffers from the effects of TBI.” Think for a second how absolutely ridiculous that would be for everyone else. Would you ever say in your life, “A woman has brown hair” or “He has blue eyes.” “You suffer from bushy eyebrows.” You would never do it. Never. Why assume someone is suffering without speaking to them? If you only acknowledge the disability, you are not drawing these conclusions. “Augustus has autism.” No judgments. Just the facts. It is not that hard.
My son can now look anyone in the eye and say, “I’m a graduate.” His coursework was the same as most of the students and his grades were good. It took him longer than others. He can take care of himself. He has a long future ahead of him with people who will love and encourage him.
Ableism is difficult. Our society still likes to think that it is right to define people without saying that they are disabled or that they respect them.
As the students graduated, a speaker stood in front of us and laughed with parents, “How many of you are ready to deal with IEPs and thought you couldn’t do it anymore?” We raised our hands.
My children are both grown up and are finding their new place in the world. I’m damn proud of both of them. Yesterday I asked for our first interview as a nursing home, received it, and had it to look after children like my son – disabled children slipping through the system. I know what it’s like to be your lawyer. Once we went through the papers, we knew this was going to be another part of our journey.
The end of a long journey.