Grandma

This is not quite how I thought I'd be ending my first month here. Tonight I got an email from my mother to let me know that my grandmother, who has Alzheimer's, has suffered a sudden decline and is in the hospital out in western Washington. She will have to be moved to an assisted living facility immediately. Mom is going out to WA this weekend. There's not much else to say at this point, but I thought I'd post this here because, if anyone is actually reading this, we could certainly use your prayers. Thanks.

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.

Woo-hoo! My first comment!

Just got finished writing that last post, and I noticed my first one had a comment! So maybe I'm not just talking to myself after all! Woo-hoo!

And oh yes, the Cubs won again today. Let's see if they can finally overtake the D-backs for the best record in baseball!!!

Now that I've finally caught my breath...

One board game a number of people in my family enjoy is Risk, in which you win by taking over the world. (I could never get into it, always bothered by all the geographical distortions, but oh well.) So I had to smile at the start of last Thursday's episode of "LOST," which showed Team Locke playing the game. That was the last light-hearted moment of this very intense episode--intense even by "LOST" standards--from which I'm still recovering! Was this worth the five-week wait? Ohhhhh boy...

Some thoughts: I just love what they're doing with Sawyer's evolution as a character. When we first met him, he was one of the most unlikable characters on the show, and now he's literally risking his life for his friends. I know some people think such a dramatic turnaround is a stretch, but it feels just right to me. Over the past 3 1/2 seasons, we've watched him bond with his fellow castaways despite his own efforts not to, and behave in ways that suggested a much more generous spirit than he was willing to admit. Before leaving on the raft in Season 1, he makes a point of telling Jack of his encounter with Jack's father. When he, Michael, Jin and Walt are attacked on the raft, he saves Michael's life despite having been shot himself. In a feverish state after his wound becomes infected, he blurts out to Jack that he loves Kate. In Season 3, he's shown giving some of his food to Vincent when he thinks nobody else is looking, and he's visibly moved when Hurley enthusiastically embraces him upon his return to the camp after escaping with Kate from the Others. It seems as if the Survivors of 815 have filled much of the void he's had in his life ever since the deaths of his parents. In some ways, his stay on the island has been every bit as healing for him as for Locke and Rose--only in his case, it wasn't the island itself that healed him, but the other people on it.

I also thought it was good that when Claire was pulled disoriented from her ruined house, she initially thought it was Charlie who was rescuing her. I understand that both the large cast of characters and high-paced nature of the plot made it difficult to show her grieving for Charlie, but this let us know she does still think of him. And speaking of grief--the writers and Michael Emerson combined to accomplish something I didn't expect: I actually felt sorry for Ben, as well of course for Alex.

Like many viewers, I will be terribly disappointed if Desmond and Penny don't end up living happily at the end. Their love story has always packed such an emotional punch that it's impossible not to root for them. But while I hope Ben never succeeds in making good on his vow to Widmore to kill Widmore's daughter, I had to wonder if the impact of doing so would be quite what Ben hopes. We now know that Ben has some capacity for genuine love; the same can't yet be said of Widmore, and I have my doubts about his being anything other than a power-hungry psychopath. Were he to say the same things about Penny that Ben said about Alex in his vain attempt to save her--"She's only a pawn"--I don't know that he'd be lying.

My rant for the week

Something I just read on another blog has got me thinking. And grinding my teeth a little, to be perfectly honest. When it comes to fame or notoriety, what crosses the line? Is it acceptable to approach someone you see on the street who happens to be famous, even if they're clearly busy doing something not remotely related to you? What about showing up unannounced and uninvited at that person's home? Now, let's change it up a little: We're not talking about a celebrity, but rather a famous landmark, a historical event that occurred there, and the neighborhood of very ordinary people who surround it. Do most of us ever think of how our behavior around such landmarks affects the individuals of that community?

I'm not at all famous myself, but the neighborhood where I work, go to church and live much of my life certainly is. There's Wall Street--and it is an actual street, by the way, one that contains both office buildings and residences--there's Battery Park, where people can get gorgeous views of the Statue of Liberty and Ellis Island; and of course there's the World Trade Center site, where you can't see much of anything. Though that doesn't stop people from coming to gawk.

Let me make it clear that not all visitors to the WTC behave inappropriately. I've taken out-of-town guests there myself, and I've seen people become very visibly moved upon first viewing a site that I've out of necessity become accustomed to. (I wouldn't say that I'm used to it.) I'm glad that even after six and a half years, so many people want to learn more about an event that so thoroughly altered my and many others' lives. I'm grateful that people still care. At the same time, I can't get over the crassness and thoughtlessness that some visitors display around the site.

I'm conflicted about just how much carelessness crosses the line. I recognize that my emotions are very much involved, and I don't think it's entirely fair to try to impose my feelings on individuals for whom Lower Manhattan is just one stop on a whirlwind tour of the city. Is it too much to ask, however, that people not appropriate the site for political protests that have little or nothing to do with 9/11? That wacko conspiracy theorists not harass me as I make my way from the subway to the post office? That tourists not purchase graphic photographs from street vendors, then blithely carry said photographs around for all to see, including those of us who really don't need or want to see those images?

Right next to the WTC, on the same block I worked on three years ago, there is a firehouse. It is a real, functional firehouse; the brother of a friend of mine was stationed there and was one of the 343 firefighters murdered in the attacks. The crowds around this house are easily as large, and as obnoxious, as crowds I've seen around celebrities. The guys there generally try to remain friendly with tourists, but being treated like public figures gets to them, especially because it only reinforces the daily reality of their surroundings. For most people, 9/11 meant a shocking TV event; but for these firefighters, it meant countless funerals for friends and colleagues.

It gets to me the way so many tourists seem to think of the area around the WTC site--and New York in general, for that matter--as a museum, or even an amusement park, set up specifically for their benefit, rather than as a real home and place of work for hundreds of thousands of very ordinary people. Large tour groups often crowd an entire block, and what's worse, get angry with people like me as we try to walk through them to get to work. What possesses someone to behave this way? Would they find it acceptable if I were to behave the same way in their neighborhoods, on their front yards?

I remember being horrified, shortly after Hurricane Katrina, at the site of reporters and camera crews barging into abandoned and decimated homes in Louisiana and Mississippi. Those houses may not have been inhabitable at that time, but they were still private property and should have been treated as such. The fact that their owners had obviously suffered tremendous loss in the storm should have engendered compassion, not exploitation. Hadn't they already suffered enough, without having to endure the indignity of having their flood-wracked kitchens and bedrooms and basements broadcast on national news?

What much of this comes down to isn't so different from the reasons why some people find it acceptable to annoy, pester and sometimes thoroughly creep out famous actors, singers, athletes and politicians. It's a struggle for me to put into words what I sense is going on here: That something about seeing a person, place or event on TV, in a movie, in a magazine article, etc., leads to an inherently warped view of the subject. To most people, both 9/11 and the community in which the worst of the devastation occurred are current event subjects. They're not really "real," at least not in the same way that they are when you spend a lot of time in the immediate vicinity. And while most people understand intellectually that the attacks were and are much more than a media event to some people, the full implications of that aren't processed, and people behave in ways they never would when confronted with a much more private tragedy. It's not all that different from society's habit of objectifying public figures. We're treating normal people who happen to have high-profile jobs in ways we would find unacceptable were such behavior to be directed back at us.

It's a struggle for me to find the right way to express this, but when I observe the way people crowd around someone who happens to be well-known, the behavior and the underlying attitudes behind it often seems familiar, not at all unlike the behavior of some tourists who visit the WTC site. There's an undercurrent of both novelty and thoughtlessness that at best can only be described as distasteful. And yeah, it bugs me.

OK, rant over :)

THE LIST: 2008

PLACES VISITED:
New Jersey
Pennsylvania
Ohio
Michigan
Washington
Ontario
New York
Massachusetts
New Hampshire
Maine
Connecticut
Maryland
Delaware
Indiana
Illinois
Missouri
Oklahoma
Texas
New Mexico
Arizona
California
Mexico
Nevada
Utah
Colorado
Nebraska
Iowa
Japan
New Brunswick
Virginia
District of Columbia
Germany
Wisconsin
Florida
Peru
Alaska
West Virginia

PLACES STILL TO BE VISITED:

US STATES AND PROTECTORATES:
Alabama
American Samoa
Arkansas
Georgia
Guam
Hawaii
Idaho
Kansas
Kentucky
Louisiana
Minnesota
Mississippi
Montana
North Carolina
North Dakota
Northern Marianas
Oregon
Puerto Rico
Rhode Island
South Carolina
South Dakota
Tennessee
US Virgin Islands
Vermont
Wyoming

CANADIAN PROVINCES AND TERRITORIES:
Alberta
British Columbia
Manitoba
Newfoundland
Northwest Territories
Nova Scotia
Nunavut
Prince Edward Island
Quebec
Saskatchewan
Yukon

COUNTRIES:
Afghanistan
Albania
Algeria
Andorra
Angola
Antigua & Barbuda
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bhutan
Bolivia
Bosnia & Herzegovina
Botswana
Brazil
Brunei
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Cape Verde
Central African Republic
Chad
Chile
China
Colombia
Comoros
Congo1
Congo2
Costa Rica
Croatia
Cuba
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
East Timor
Ecuador
Egypt
El Salvador
Equatorial Guinea
Estonia
Ethiopia
Eritrea
Fiji
Finland
France
Gabon
Gambia
Georgia
Ghana
Greece
Grenada
Guatemala
Guinea
Guinea-Bissau
Guyana
Haiti
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Israel
Italy
Ivory Coast
Jamaica
Jordan
Kazakhstan
Kenya
Kiribati
Kosovo
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Libya
Liberia
Liechtenstein
Lithuania
Luxembourg
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Mauritania
Mauritius
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Morocco
Mozambique
Myanmar
Namibia
Nauru
Nepal
Netherlands
New Zealand
Nicaragua
Niger
Nigeria
North Korea
Norway
Oman
Pakistan
Palau
Panama
Papua New Guinea
Paraguay
Philippines
Poland
Portugal
Qatar
Romania
Russia
Rwanda
St. Kitts & Nevis
St. Lucia
St. Vincent & the Grenadines
Samoa
San Marino
Sao Tome & Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Korea
Spain
Sri Lanka
Sudan
Suriname
Swaziland
Sweden
Switzerland
Syria
Tajikistan
Tanzania
Thailand
Togo
Tonga
Trinidad & Tobago
Tunisia
Turkey
Turkmenistan
Tuvalu
Uganda
Ukraine
UAE
UK
Uruguay
Uzbekistan
Vanuatu
Vatican City
Venezuela
Vietnam
Yemen
Zambia
Zimbabwe

OTHER
Anguilla
Antarctica
Aruba
Ascension Island
Bermuda
Bonaire
British Virgin Islands
Canary Islands
Cayman Islands
Christmas Islands
Cocos Islands
Cook Islands
Curacao
Falkland Islands
Faroe Islands
French Polynesia
Gibraltar
Greenland
Guadeloupe
Guernsey
Hong Kong
Isle of Man
Jersey
Macau
Martinique
Mayotte
Montserrat
New Caledonia
Niue
Norfolk Island
Palestine
Pitcairn Islands
Reunion
Saba
St. Barthelemy
St. Helena
St. Pierre & Miquelon
Svalbard
Taiwan
Tibet
Tokelau
Tristan da Cunha
Turks & Caicos
Wallis & Fortuna
Western Sahara

It might be! It could be! It...

If Chicago wins tomorrow night and the Diamondbacks lose, my Cubbies will have the best record in baseball. Making it even sweeter for this New Yorker who proudly supports Cubbie blue, neither the Mets nor the Yankees even lead their divisions.

The Yankees, of course, are the team America loves to hate. And the Mets are a team against which every true Cub fan holds a grudge. Never mind that I was born 13 years after '69; I still hate 'em. Their collapse at the end of last season--which coincided with the Cubs' clinching the NL Central--was exquisite. And if their recent two-game sweep at Wrigley is any indication, they've picked up exactly where they left off last September.

The best thing about growing up in Grand Rapids, Michigan, was having Chicago just a few hours away. It's a great town; how it compares to NYC I can't really say, since I've only lived in one of the two. When it comes to most sports (especially Giants and Rutgers football) I've become a New York fan, but my baseball loyalties were set in stone long ago. There are three things that need to happen before I die: I have to get to all 50 states. I've been to 30 so far, so I'm well on my way there. I have to see how LOST ends; since that's scheduled to occur in two years, I shouldn't have much trouble. And I dearly want to see my Cubbies win the pennant. The last time they did that, my grandfather was a preteen, so that final wish seems the most in doubt, even if I can reasonably expect to live for a good half-decade longer at least. Is this the year? Cub fans expect every year to be, and something invariably goes wrong. And yet, we remain unfailingly loyal year after year, in the hope of experiencing that one magical summer when everything goes right.

My First Blog

Newbie here! I'm still finding my way around this site. I've never had a blog before, and I'm a bit excited about having a place to express myself freely, without the constraints of deadlines, word counts and editorial biases. As a freelance writer, I constantly struggle to balance what I want to write with what I suspect editors want to hear. I'm looking forward to posting what I want when I want.

I've noticed a number of people here have different blogs for different topics. For now at least, I plan to stick with one blog, in which I write about anything and everything that interests me. In no particular order, that might include:

• The idiocy of the official plans for the World Trade Center site, and the ineptness of those in charge of building it.
• Life as a Cubs fan living in New York, and how delightful it was last fall to see my Cubbies win their division while the Yanks settled for the Wild Card and the Mets missed the playoffs completely.
• Places I've visited, and which places I still hope to visit (i.e. any place that exists).
• Thoughts on religion, spirituality, politics and all that other controversial stuff.
• My recently-acquired LOST obsession (Yes, I am NYCub from IMDb and Lostpedia!)
• Living with autism (no, we're not all Raymond Babbitts!)
• One of my great loves--MOVIES!!

And anything else I feel like talking about. Why not? It's my blog, and here at least, I get to be my own editor.