Self-Advocacy Saved My Life

Jan 21 • Newsroom • 1913 Views • Comments Off on Self-Advocacy Saved My Life

By Andee Joyce

Six years ago, by the time of my 44th birthday, I was in a downward spiral, feeling like I was capable of nothing and that there was no hope for me. I thought nobody could possibly like me, love me, or respect me—and if they said they did, they were probably lying. I had a life partner, but I was sure he would leave me once he figured out what a loser I was (despite the fact that he had stuck around for two years knowing everything about me). I was probably halfway on my way to dying, quite possibly by my own hand.

Today, six years following my diagnosis of Asperger’s syndrome, I am the Portland Chapter Lead for Autistic Self-Advocacy Network (ASAN), a member of the Oregon Council on Developmental Disabilities and the self-advocate representative on the Oregon State Commission on Autism Spectrum Disorder. I also serve as chair of the OCASD’s Adult Subcommittee which has developed the new Vocational Rehabilitation module and client checklist.

I’ve met with legislators, written for multiple anthologies, created webinars, organized protests and vigils, educated psychiatry residents, spoken on panels and done multiple other things I never thought I could do before. I’m beginning to believe I might actually have a purpose, a role in making other people’s lives fuller and better. And the life partner is still here, and we just celebrated our eighth anniversary, the longest and best relationship either of us has ever had.

Self-advocacy, quite literally, saved my life.

I’m not sure my success in this field has depended on having any kind of special talents, so much as it has depended upon showing up and saying yes to things other people refused to do. Or at least saying, “I’ll try it and see what happens.” Prior to my diagnosis, my career dreams had all gone down the tubes when I couldn’t manage my social and sensory issues well enough to succeed the way I wanted to, and so I assumed that I was capable of nothing much. Once I recognized that I had a disability, and that my “failure” had nothing to do with not trying hard enough, or being lazy or incompetent, I figured there might be some things I could do if I was willing to work with the brain I had, rather than against it. But I didn’t know what those things were just yet, until I tried them.

When I was first diagnosed, I went into a horrible depression spiral after realizing that I could never become the person I had always wanted to be: someone who could function on six hours of sleep, grab a cup of coffee, and go go go go go, always with a smile, always graceful even on three-inch heels, effortlessly making friends and contacts, knowing exactly what to say and when to say it, never coming down with migraines or digestive problems at exactly the wrong time.

After my therapist diagnosed me, I was referred to a psychiatrist who had only been in practice a few years and had limited experience with autistic adults. It turned out I had as much to teach him as he did me. He was so impressed by what I had to say that he asked me if I would be willing to have psychiatry residents sit in on my medication appointments. He said he would understand completely if I said no, because most people would, but I said yes.

I wanted doctors to know about my disability, and the ways it could present in adults who had gone undiagnosed for decades (since the diagnosis of Asperger’s didn’t exist when we were kids), and too many of them didn’t have that knowledge, which is why it took me 44 years to be diagnosed. If I could help prevent that from happening to someone else, I was willing to talk to them.

And they were blown away. My psychiatrist told me that one of the residents had told him, “I would drive across town to hear her speak.” It was my turn to be blown away! Me, a public speaker? Never in my wildest dreams would I have thought I could do that. But now I do it all the time. Similarly, when I first started going to the ASAN monthly meetings and saw all that the Chapter Lead had to manage, my first thought was, “I could never do that.” And when she asked me to take over as Chapter Lead, I knew it was because nobody else wanted to do it. But I did. I wanted to see what I was capable of.

A lot more than I thought, it turns out. This year, our chapter won an Administration on Intellectual and Developmental Disabilities (AIDD) mini-grant to become a stand-alone 501(c)(3) nonprofit and create an online informational clearinghouse for services available to autistic adults in Oregon–and I wrote the grant! Not bad for someone who, until a few years ago, thought she couldn’t do anything.

I think one of the most important things in my life has been sorting out my real limitations from self-imposed false ones. I know what some of my real limitations are because I’ve tested them repeatedly. I will always have poor executive functioning and will need to avoid things like credit cards or extensive check-writing, because trying over and over again to keep all that straight just got me into more and more trouble. I will always have problems getting up in the morning, because my body clock has wired me to be a night person. I will always have issues with reading people in a social setting, especially if I don’t know them.

My body will always be super sensitive to all sensations, especially pain, and will often respond with migraines, digestive problems, and other minor maladies. I understand that now, and I honor it. But no longer do I look at things I haven’t tried which sound like they could be interesting, and automatically respond with, “Oh no, I could never do that.” All I have to do is look at my resumé, which I have built over the past few years, and I say, “Wow, I did all that? Me?”

Yes, I did. Me.

Andee Joyce is a writer, speaker, and disability self-advocate, who was born in Brooklyn, New York and has lived in Portland since 2005. Since arriving in Portland, she has gotten a proper diagnosis, fallen in requited love with the man of her dreams, and discovered her life purpose, which proves to her that Portland is magic. She is currently working on a young adult novel about autism and baseball, two great tastes that taste great together.

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