Monday, April 28, 2008

Struggling with autism and the prejudice it engenders

I wrote the below article for Downtown Express, a weekly newspaper that covers Lower Manhattan. Although it was published last November, the feedback I've gotten has been great. While I'm not sure the quality of the writing itself quite deserves the enthusiasm shown by friends and relatives, I do think that it raises some important points about how society views those of us who are autistic or otherwise mentally disabled. And like it or not, autism is and will forever be a part of my life.

Bless my church for its staff has sinned

By Rachel Snyder

Stories of prejudice and discrimination frequently make local and national news, but in Lower Manhattan we often see ourselves as being above the fray. Bigotry may occur in a small Louisiana town or in the high-stakes world of professional basketball, but not in the life of your average progressive, open-minded Downtowner. But while we embrace gender equality and gay pride, prejudice still exists here, and members of our community can still be its victim. Several weeks ago, that victim was me.

This past summer, my Downtown church announced plans to send a dozen parishioners to New Orleans on a short-term trip to aid in the rebuilding effort, and I was eager to go. I love to travel, and I’ve never been to the Gulf Coast. More significantly, I hoped that being of use to a part of the country suffering the aftereffects of disaster might help to relieve some of the bitterness that 9/11 and the botched World Trade Center rebuilding process have engendered in me.

What I wasn’t prepared for was a phone call I received from one of the organizers of the trip, who I’ll refer to as “Amy,” informing me that I would not be allowed to participate because I have a disability.

I have never been able to get a clear diagnosis of my disease, although it’s agreed that what I suffer from is either a form of autism or a related condition.

Experts don’t have one uniform definition of autism, so its determination in people like me who are relatively high-functioning is tricky, if not impossible. The bottom line is that I suffer from a debilitating condition that has brought a great deal of heartache to my life. Among other things, it makes me extra-sensitive to sound and touch, and it has robbed me of the intuitive ability to read the nonverbal signals that are believed to entail the majority of human communication. Imagine the social ramifications of being unable to pick up on the majority of what is communicated to you during the course of every single face-to-face conversation you have.

Despite this, I have been determined from the start of my life to do everything that “normal” people do. I insisted on going to camp as a child; as a teenager I went on two mission trips to Mexico and was an exchange student to Japan, Germany and Peru. More recently, I moved to New York on my own, worked jobs without any special accommodation, joined American Mensa despite not knowing anyone else who was a member, and walked through the doors of my church even though I had neither acquaintances there nor a background in this specific Christian tradition.

Amy became a staff member several months after I joined this church, and since then we’ve had a great deal of interaction. Until recently, I considered her a friend, and believed her to be someone I could trust. I confided in her about my condition and tried to describe some of the ways in which it affects my life. Discovering that she saw me as a disease first and a person second was a devastating blow.

In many ways, discrimination based on disability has become less of a problem than it once was, but anti-disabled prejudice remains more socially acceptable than other forms of bigotry such as racism or homophobia. Unlike other minority groups, the differences between those who are disabled and those who aren’t are more than merely superficial. This in turn leads people to conclude that excluding us is, to a certain extent, justified.

And of course, there are certain tasks that we simply can’t do: No blind person is suited to drive a car, and you’re not likely to find a quadriplegic performing open-heart surgery.

What the non-disabled tend to forget, though, is that most of us with disabilities are perfectly capable of determining for ourselves what we can and can’t handle. Being blind, deaf, dyslexic or autistic doesn’t make you stupid. One of the most hurtful aspects of what happened to me was the fact that, rather than simply expressing doubts about my ability to participate on the trip, Amy took it upon herself to make that decision for me without my input. There is nothing more disempowering for the disabled than for someone else to decide for us what we are and are not capable of.

For those like me who suffer from mental rather than physical handicaps, the discrimination is even more prevalent because our handicaps aren’t immediately obvious to others. And because the disabilities tend to manifest themselves in our behavior, people are less likely to recognize the symptoms of our disorders for what they are. When I was a child, I received constant negative feedback from my parents, teachers and peers for behavior that was largely out of my control, and as a result I spent the first two decades of my life bathed in constant shame and self-loathing.

Through determined effort, I have been able to overcome the worst of my limitations, but I will always be autistic. And I want to make this perfectly clear: Mental disability is not the same thing as mental instability.

It hurt to miss out on the New Orleans trip, but much worse was the way in which this incident has isolated me from my church community. Suddenly, I no longer felt safe there, and haven’t been back since. If Amy could hold such a poor opinion of me based on my past participation in church activities, how do I know others haven’t reached the same conclusions she reached? How can I believe them if they claim they value my presence in the church, when Amy herself had previously made the same comments?

In the past two months, I’ve had trouble sleeping at night and concentrating during the day. I miss my church, but I’m unable to see myself as an active participant. I don’t know who I can trust.

This is the fallout of discrimination; it makes you question your place in the world. I’m even angrier now than I was before at those churches that openly discriminate against women and gays. But my church has no such policies, and I know from what I’ve seen there that its stated commitment to inclusion is more than mere idle talk for some members. If this could happen here, at a generally open-minded church in the middle of a progressive community, it truly could happen anywhere.

Its progressivism is one of the things that initially drew me to Lower Manhattan, and I continue to feel that the liberal attitudes that pervade our community are a blessing. But all of us, no matter how open-minded, carry prejudices ingrained within us that, if we’re not careful, can lead us to discriminatory actions, with devastating consequences for others. If there’s a lesson to be learned, it’s to not allow ourselves to become so smug that complacency sets in and our own bigotries go unchecked. Simply holding liberal opinions on social issues doesn’t make us progressive; if we’re to expect inclusiveness from society as a whole, we must be sure we’re holding ourselves to the same high standards.

2 comments:

JuliaVP said...

You show amazing insight into this article. I really enjoyed reading it, although I was not encouraged by the way your church responded. Keep writing!

Cara said...

hmmm...