Tomorrow night, Thursday, November 18, 2021, I will be one of four women with disabilities on an hourlong free Zoom panel sponsored by the Skokie Public Library:

Self Advocacy and the ADA–Online Event: Personal Perspectives, Challenges, and Success Stories
Thursday, November 18, 2021
7:00 pm – 8:00 pm
Zoom Event

What does self-advocacy look like when navigating the world with a disability? Four panelists from different fields share stories of how they’ve advocated for reasonable accommodations.

Panelists will share lessons learned and provide tips on fighting for more fair and just treatment in the workplace and beyond.

The three panelists with me are Deirdre Keane, a teacher/librarian who was born with a hearing loss and got a cochlear implant during her freshman year in college; Michele Lee, an experienced finance professional who uses a wheelchair; and Tina Childress, a late-deafened adult with bilateral cochlear implants., The four of us will each be given 10 minutes to tell a few personal stories of advocating for ourselves, leaving time afterwards for discussion and questions. . My plan is to talk fast and describe three experiences, one a success, another a collaboration, and the third a failure:

1. Appearing at a Chicago city court after a cab driver refused me a ride with my Seeing eye dog.
2. Graduating from training to volunteer with hospice and never being paired with a patient
3. Challenges I faced when the health club I’d been swimming at closed due to COVID and no other indoor pool facility would allow my Seeing Eye dog to lead me poolside to swim laps.

The hourlong panel is free, it will be hosted on Zoom on Thursday, November 18 at 7pm cst, and you can register for it here. There’s a spot on the registration form to enter a library card #, but a library card number is NOT required to register. You can attend free of charge even if you are not a member of the Skokie Public Library. Questions? Call the library at 847-673-7774.”

After Gus was born back in 1986, Beth was at sea. (I was hanging onto a life preserver.) Barely a year after learning her sight loss was permanent, she was faced with helping to raise a newborn with an extremely rare genetic condition. Gus was a complete enigma, with little data about life expectancy or developmental advances. What data existed was not optimistic.

One of Charlie’s loves was woodworking. And he was good.

Beth did what she has always done: That is, do something. That’s when we met Charlie Sweitzer. We had received advice from another parent of a developmentally disabled child: find a church. The advice did not come from one’s own social and spiritual needs: The mother just told Beth that through regular attendance other churchgoers would pick up on Gus’ incremental developmental advances that we might not recognize on a day-to-day basis.

Beth remembered reading and hearing about the McKinley Presbyterian Church when she was still in College. McKinley is in Champaign in the heart of the University of Illinois Campus. The Church was known (and in some circles, reviled) for taking  stands on some very controversial issues and for taking action to help those who need it. One of the pastors, Charlie Sweitzer, was the force behind it all.

And what a force. He helped found the Men’s Emergency Shelter (a refuge for the homeless men housed in the McKinley Church/Foundation basemen)t. McKinley hosted space for the Gay Community AIDS Project, a health support system started during the beginning of the AIDS crisis. He was actively involved with the local PFLAG — Parents and Friends of Lesbians and Gays.

Charlie performed same-sex marriages (civil unions back then) long before Illinois state law recognized the unions, and many of the couples were of faiths where their union was not sanctioned.

He and McKinley embodied true Christian values: Acceptance and support. That’s what Beth and we needed. And we got it. Beth started attending regularly, and even I, a lifetime eschewer of churches, attended semi-regularly. Charlie challenged all of us to help people in the ways we can. To put our efforts and our money where our mouths and sanctimony were. He also provided a space where we could think idealistically without apology.

Charlie taught Beth to bake bread. Good bread. He and she improvised techniques that enable her, to this day, to bake a nice baguette and a great Challah. He eventually hired her as a volunteer coordinator, her first paid employment after she lost her sight. He encouraged her to come on a work project and Mexico—helping to add on to a Downs Syndrome institute.

It was not saccharine. It was not condescending. It was, “You can do this.” And it was also, “You better do your best.”

You all know Beth. She’s intrepid. She’s courageous. She’s resourceful. But after a double body blow, she was none of those things.

I’d say that Charlie’s care helped her become her old self. But helping her succeed at doing things she had not done before she lost her sight—it’s not an exaggeration to say that that his good faith helped lead her to her new self. The one you and I know today.

I told that to his son when we attended a gathering for Charlie and his wife Phyllis at their home in Champaign. Charlie died about a month ago, exactly 13 months after Phyllis passed away. In the middle of the Covid shutdown, Phyllis’ passing couldn’t be a public observation.

On Saturday, we celebrated them both. I could go on about them, but you best read Charlie’s obituary. It closes this way:

Charlie was a rebel and a legend, and to all of those in his wide circle of family, friends, colleagues and casual acquaintances, 86 years were not nearly enough.

Editing an alt-weekly newspaper in Champaign-Urbana some 20 years ago taught me a ton. I already knew journalism was difficult work. What I didn’t understand was how critical good local journalism is to any community. And how difficult it is to do local community—focused journalism when you’re a local.

When I took the helm,  the paper was widely dismissed as a rag that only published progressive screeds and did irresponsible work (in fact, it had just settled a lawsuit for doing…irresponsible journalism.) It had been blackballed by lots of local advertisers.

It was pretty awful for a long time but we managed to do enough good work, to give the paper a voice, to gain some credibility, and to ultimately break even.

As we did, however, at least some self-described progressives didn’t like it. We’d gone mainstream. And that’s when I learned about something that I came to call “progressive fundamentalism.”

I may have to trot down to Sandmeyer’s and buy a copy.

To wit, an Urbana City Council person (full disclosure, he’s become a close friend) was and is a Mennonite. At the risk of oversimplifying, Mennonites believe in non-violence and are pacifists. Well, part of Urbana’s population aspires to be Berkeley, and some of that population was on the council, too. They pushed to have Urbana officially oppose the brewing invasion of Iraq. (Years earlier, Urbana had declared itself a nuclear-free zone.)

My friend opposed the measure on the grounds that it was meaningless, symbolic only, and more important—not what the city council is charged to do.

Well, he was publicly excoriated as essentially a war monger. It drove him near to tears in public, and it eventually drove him off the council.

That was when I learned that some people who identify as progressives can be as mean, narrow-minded, and nasty as any religious fundamentalist.

So I’ve taken note of the writings of John McWhorter, who is arguing against what he calls “a religion of anti-racism” in a book title “Woke Racism, How a New Religion Has Betrayed Black America.”

Bear with me now: He fully understands that racism exists, that we need to address inequities, and we need to take tangible steps to help people who need it. It’s that tangible help that he sees as lacking.

McWhorter is a linguist at Columbia University. He also is Black.

Some excerpts from an NPR interview:

This is a religion where instead of it being about your faith in Jesus, it’s about showing that you know that racism exists above all else, including basic compassion. That’s religious.

And then also, the way we talk about white privilege is eerily consonant with the way one talks about original sin. You have it from the beginning, it’s a stain that you’ll never get rid of. You’re supposed to always think about it. It’s there regardless of the condition of your life, and you’re going to die with it. So white privilege becomes the original sin that you’re supposed to live in a kind of atonement for.

—–

It’s funny, I’m grappling with this idea that the response to me is to say “he doesn’t know systemic racism exists.” I think part of it is that that’s a very clumsy term. Yes, I know that those inequities exist. I think that those inequities must be battled. The issue is, what do you do to battle them? And I say, telling people not to be racist or thinking of those inequities as some abstract version of bigotry doesn’t help people who need help.

—-

…we’ve gotten to the point that we’re so focused on what people say and how they say it that we’re paying more attention to that than to the perhaps less glamorous work of getting out on the ground and trying to change society.

We have to think about, say, 50 years ago when people who felt very modern were doing civil rights activism in a real way. It would have looked very peculiar to them that we’re so concerned with what things are called. There was a little of it, but not nearly as much as there is now. It’s because, to an extent, policing language is easier. Civil rights activism is not glamorous in terms of what really creates change. … I want to help people, and I’m very interested in policies that change Black lives. And I’m seeing a distraction from that.

The full NPR interview is here.

While you’re at it, you might also check out his columns in the New York Times (he’s a regular contributor. Here are two:

I’m With Condoleezza Rice About White Guilt

Cultural Appropriation Can Be Beautiful

To me, there’s nothing terribly edgy about his ideas—they make sense.

But I hope you’ll give them a read and judge for yourself.

Seeing Eye dog Luna has been working with me in Chicago for a year-and-a-half now, and somewhere along the way she has picked up a tendency to veer when leading me across certain intersections. We could be, say, on a sidewalk along a busy street with the traffic at our left-hand side going the same direction we are. We get to a busy crossing, I listen to when it sounds safe to cross, I command , “Luna, Forward!” and for her first three or four steps into the street she veers left into that parallel street before curving back into the crosswalk we’re supposed to be walking in.

I contacted the Seeing Eye about this, they asked if Mike could take a video, and after he forwarded that video to the Seeing Eye they called to assure me Luna is not the only guide dog they’ve known to develop this bad habit. “We even have a name for it,” the instructor on the phone told me. “It’s called “arcing’.”

The Seeing Eye is sending instructor Chris Mattoon out tomorrow to spend three days here helping Luna think straight.

Likely he’ll be teaching me a few things, too – I could be inadvertently holding the harness incorrectly at intersections, not facing my shoulders in the right direction before giving the command, delivering my commands too quietly. These dogs pick up on such things.

Longtime Safe & Sound blog readers might recognize Chris Mattoon’s name.

Chris in a photo taken back in 2010 with his own dog Gilda.

Ten years ago he came out to help me decide to retire my third Seeing Eye dog, Harper. In 2011 that heroic Yellow Labrador Retriever saved me from getting hit by a car at a Chicago intersection, and when Harper developed PTSD behaviors afterwards, Chris helped us make the decision to give our hero an early retirement.

From there Chris spent months training Golden/Yellow Labrador Retriever Whitney to become my fourth Seeing Eye dog. I flew to the Seeing Eye in 2012 to spend three weeks working with Chris and Whitney before bringing her home to Chicago. Since then, and especially during the pandemic, Chris has become the Seeing Eye’s main troubleshooter, the trainer they send on house calls to fine-tune the work of people — and dogs — who need a little extra help after graduating from the training program in Morristown, New Jersey.

Please don’t worry that Luna and I are having a terrible time working together! Really, we’re doing very well. We just need some helpful suggestions and reassurance, and I’m grateful the Seeing Eye is sending Chris to provide just that. Cutting this blog post short now to start getting ready for the next three days training — and oh, if you are reading this and are in the memoir-writing class I lead Wednesdays at Admiral-at-the-Lake, don’t fret. Chris is meeting me early this Wednesday morning. We’ll see to it that Luna and I are done in time to lead your afternoon class!

I’ve missed a couple Mondays recently, and for that, I apologize. The first was owed to exhaustion. On October 10 I left for Tarrytown, New York, the start of a weeklong effort to put on…gulp…an in-person conference. The non-profit I work for—Phius—puts on an annual conference and after a virtual shindig last year, we gathered again. We limited it to smaller-than-usual numbers, and I’m happy to report it was an enormous success. But I returned a week later utterly exhausted, like my co-workers.

We had 400 people and 30 exhibitors, and they all behaved. Masks were worn, and the weather cooperated, allowing us to gather outside between sessions and soak up beautiful weather in the Hudson Valley.

We were near Tappan Zee, a three-mile-wide span of the Hudson River. On the evening of the last day of the conference,

The Tappan Zee bridge from our riverside soiree perch (that’s the moon on the right–it was a nice nightL). To see the NYC skyline, we needed  only to swivel our heads left.

we held a ticketed party at a former factory building that had been converted to a bistro. We owned the place that night. And again, the weather was fantastic. We had enough indoor space for all of us, but we mostly were outside on the third-floor deck or at  tables on the shore of the Hudson. To our right was the spectacularly lit Tappan Zee bridge, and to our left was the New York City Skyline.

It was the cherry on top of a luscious sundae.

We made a decision earlier this year to forge ahead. No virtual conference. No Zoom. No virtual rooms or virtual trade shows.

The months and then weeks in advance brought nightmares about what could go wrong. There was good reason to fret. To start, the hotel had lost its affiliation with Hilton in the midst of Covid. And like everyone in the hospitality business, they couldn’t get staff.

Several weeks before the event, the remnants of Hurricane Ida tore through, dropping eight inches of rain in a few hours, and flooding the lower level of the hotel—where we’d intended to hold some breakout sessions.

And of course, the pandemic.

Somehow, we pulled it off. Our constituents are smart and ethical, so we were confident of a high vaccination rate and of thoughtful behavior at the event.

Knock wood, no illness reported thus far.

We have received reports of elation. About the joy of being in the same place at the same time. About richly rewarding and productive serendipitous conversations that can only happen in person. That can’t happen at intentional virtual meetings.

It’s a new world, I get that. And one where we probably should meet less often, fly less, generate fewer emissions, and make the most of technology.

But don’t ever give in to the last couple years becoming the new normal. I’ve never seen such joy and energy as I did in New York.

We need each other, in three dimensions.