Outsider
For the first time in the past 25 years (give or take a few years) I’m not a part of the disability community. I’m not a special needs mom anymore. I’m not a special Ed teacher anymore. I don’t work for a nonprofit. I’m not volunteering. I’m not advocating. Basically, I’m on the outs. Not like anyone kicked me out of the club, but I feel like I can’t be a part of it anymore.
I feel guilty about not working the disabled population anymore. As far as teaching goes, I can’t even IMAGINE teaching gen-Ed kids. I’m not good at the structure and rigor of it. I don’t feel like I can work in direct care, because it’s just a constant trigger. There is zero part of me that feels like I can ever hook up a tube feed again. The intensity of handling a medical Emergency might make my heart stop. Not to mention, I ultimately failed at it. How can I take care of someone else when I couldn’t keep my own child alive? I’ve been a fierce advocate for this community for years, and I’ve come up empty handed.
I really believe that those of us that connect with the disabled population (as parents, teachers, friends, advocates, and caretakers) operate on a different frequency. We communicate differently. There’s extra-sensory perception involved somehow. There’s so many different types of disabilities, so many different strategies on how to work with people, so many medications, therapies, and diets. Blah, blah, blah. Wanna know the secret? See a person who is disabled? Just see the person. We’re so conditioned to treat, to fix, to solve, that we forget to just let people just exist to be loved. You don’t have to help or fix someone with a disability, just have a conversation. If they can’t talk, hold their hand while you read a chapter of a book out loud or play your favorite music. If you quiet your OWN body enough, they can talk to you through their heartbeat.
I guess the big reason I don’t want to work with people with disabilities anymore is because I will CONSTANTLY have to talk about Ian dying. I can’t talk about my years of experience working with people with brain injuries, without talking about my son’s injury (and how it eventually caused his death). I can’t talk with other special need parents , without saying my son died from complications of his injury. I’m a good special ed teacher because I’m a special ed mom-but I’m not anymore.
Maybe I’m not meant to work within the community itself, but with the mothers of the community. But, I’m jealous of them and the heavy gift they carry of immense love with immense exhaustion. I am able to look back at myself and see what a bad ass I was, but I could never see it at the time because I was drowning. You have to be strong enough to fight someone (usually a big bad guy, like pharmaceutical companies, insurance companies, laws, school districts etc) yet soft enough to talk through heartbeats. I’m jealous because I’ve lost a big part of my identity. I’m jealous because I used to say, “who would be jealous of me?” when treading through the complications and heartbreak of Ian’s disability. And, now I know the answer.