Monday, June 25, 2012

Love Letter to a Law

You know how sometimes, you don’t realize how much something means to you until you start to worry you’re going to lose it? That’s the situation I have been in over the past week, as I await the Supreme Court decision on the Affordable Care Act.

On Friday I had dinner with my internship mentor, Day Al-Mohamed, and when the topic of the pending decision came up, I realized something that startled me: I wouldn’t be here, doing this internship, if the Affordable Care Act hadn’t passed. Because if it hadn’t passed, I would probably still be pretending to be non-disabled.

When I entered college in 2009, I wanted counseling to help me adjust to living more independently. My family and I considered using the insurance parity diagnosis of PDD-NOS, which would mean the insurer would cover more of the cost of talk therapy. This wasn’t an option that my family had had in the past, because many of the autism-related services I’ve received weren’t covered by insurance at all. This time, we could get insurance to cover a lot of the cost – but we didn’t end up doing that. My parents chose to pay a much higher rate for my counseling, during a time when they were struggling financially, so that my insurance wouldn’t show that I had received services related to my disability. They explained to me that they were doing this because soon I would have to apply for health insurance on my own, and if the insurance companies found out that I had autism, they would reject my applications.

This was about the same time that I started feeling an urgent need to connect to the Autistic community and the disability community, to write about autism and go to events where I could meet other disabled people. Transitioning to college was very difficult for me, and I wanted to talk to people who would understand why. But when I wanted and needed this connection the most, I was learning that I had to be cautious about disclosure. I knew, for example, that I couldn’t use my full name when I was writing about disability issues, or be listed as an attendee at an event for disabled people, because being out in this way could keep me from getting health insurance in the future.

And let’s be clear: coming out as disabled is not easy. You have to struggle with your internal shame, open yourself up to societal stigma, disregard years of training that have taught you to suppress rather than show/display/discuss your disability. As a new college student, my desperation for disability community was starting to overwhelm these factors, but there was one more obstacle in my way: my desire to be able to get health care in my adult life.

So I’m not exaggerating when I say that I am able to be out and proud as an Autistic person because of this law. And being out has changed and improved my life completely. Before I was out, I expended a lot of time and energy trying to act “normal.” Now, that time and energy can be used for other things. I used to think of my disability as something that would keep me from getting a job – now, I think of it as a career asset. Before I was out, I felt isolated in my experience as a disabled person – now, it is disability that connects me to my community, my culture, and my friends. These things could not have happened if being publicly identified as Autistic still meant resigning myself to a future without health care.

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