Susan Senator

The other day I was talking to a very smart woman about perfection. This is because I was wondering how does it feel to be Nat, to be so disabled that other people make so many decisions for you, no matter how much we try to allow him his own preferences. Other people let him know that it is getting to be bedtime. Other people plan his weekends; sure, he gets choices but someone else has designed the choices. We all know so little about what Nat wants to do, to wear, to eat. During a recent phone conversation he blurted out to me that he had been home all day. I asked him why, I asked him if he was sick. He said, “Yes. Your froat hurts.” I became alarmed and asked to speak to whomever else was there — basically, going over his head, not believing him.

Interestingly enough, he said, “NO.” He simply would not let me speak to any of the staff. I just did not know what this was all about. Was he sick? What was bothering him, was it his throat, or was that a default answer? He then said, “Go to social group!” And I wondered if he maybe was really not feeling well, because he was thinking ahead to Friday night, afraid he would not be able to go to social group. I reassured him that he would go.

I called back and spoke to the caregiver anyway, because Nat could be sick after, all. She checked his temperature and told me that he was normal, and that yes, he did go to his day program today. So why was Nat saying he’d been home? What was the truth? What was he trying to tell me? This interchange made me sad because I do not know what it must be like to have something so strongly on your mind and not have anyone understand you. It grabs me by the throat, even now, to imagine this. Does he feel less-than?

I then thought about some of the adults I know in Special Olympics, who know clearly about their intellectual disabilities. How did they get to that point of perfection, such solid self-esteem, that they didn’t feel “bad” about being this way?

And I realized that I am still hung up on this stuff. I am equating able-bodied with perfection, with superiority! I must still feel, somewhere deep inside, even though I know it is wrong, that there is something bad about “having something,” a disorder, a condition. Something that separates you out of The Glorious Mainstream. What is this squirrelly part of me all about?

I think back to the obvious, my upbringing. I was raised to go for perfection. The best of everything. One of the worst insults in my family was to call something “mediocre.” Never be a dilettante, do your chores, follow the rules, do everything right. In my twenties, this upbringing wreaked havoc on me because I realized (unconsciously) that I was not cut out to be perfect. I couldn’t keep up with doctor’s appointments, with the right diet, with reading the best literature. I started to feel fear a lot of the time, inexplicable, free-floating anxiety. An undercurrent of sick dread flowed through all of my experiences.

I started to imagine illness, or strange circumstances, things that did not happen, things that could ruin my life. I was aware of this terrible irony, that in fearing a life ruined by disease, I was ruining my life. But I couldn’t stop. Eventually, with the help of another very wise woman, I figured out that my fear was about needing to be perfect, and in control of everything. And so the more I went out into the world on my own, the more fearful I became because I was experiencing the fact that you cannot control things in this life. You can’t be perfect. The world under my feet had no bottom to it. You could just keep falling, forever.

I am a long way from those miserable days. I learned how to live with uncertainty, but also to trust myself. I also learned to forgive my mistakes and imperfections — well, a little bit. But you know that saying that you have to love yourself to love other people? A twist on that would be if you can’t tolerate your own human flaws, then chances are others’ flaws are a big deal to you, too. So I still obsess about the bad stuff I see and that happens to me, going back to that childhood belief that I have to get rid of the bad stuff.

So the person I was talking to the other day asked me if it was possible that the people I know in Special Olympics are beyond where I am. That those who have intellectual disabilities, who acknowledge through so many aspects of their lives that they have this thing “wrong” with them actually feel great about their lives, and do not feel bad about their disabilities, their limitations. Maybe Nat doesn’t, either. Maybe the only one with something wrong with them is me because I still believe that perfection is something we can define and see. Something real — and desirable. When the only thing real about striving for perfection is that it makes me miserable.