Mr. Dave

Found my elementary school adaptive P.E. teacher, Mr. Dave.   But he has cancer…

I remember him coming to class with his bike shorts on; playing with the colorful parachute that came out of his duffle bag full of gym toys with my schoolmates with disabilities; crawling on the cafeteria’s carpeted floor to get to t-ball bases.

wc soccer

Photo of a girl playing soccer in a power wheelchair; it’s not me, although my first power chair was also hot pink.  Photo credit: “Low Budget Adapted Physical Education Equipment Ideas,” https://www.nchpad.org/1636/6696/Low~Budget~Adapted~Physical~Education~Equipment~Ideas.

He instigated my almost first kiss with, Ben, a Jewish kid a grade below me who used a wheelchair but could walk independently. Ben kept saying “Miss me, miss me, now you gotta kiss me,” probably as we played t-ball or some other game involving tagging. So Mr. Dave put him in a headlock and encouraged me to kiss him.

I got into the headlock and kissed Ben’s nose, but told everyone I kissed him. Nobody believed Ben when he said that I didn’t. Ben and I rode the bus from Skokie together to our school in Northbrook. He lived behind the SAS Shoe Store. We lost touch when he transferred to his Skokie school once laws changed and Skokie schools became accessible to us. I stayed at the Northbrook school until my family moved my 5th grade year.

Anyway, back to Mr. Dave.

I remember he gave a talk on eating healthy to all my classmates in my grade. It felt odd seeing him with my abled-body classmates instead of in my adaptive gym class. He mentioned how his brother only chewed meat, which sounds like me. When he asked what we ate, my friend answered seaweed, probably thinking this was the smart, healthy answer that would stump him. I don’t remember his reply.

He was the only person to get me to do sit-ups.

He got me in so much trouble with my mom. Instead of stickers, he’d stamp our hands. My mom thought this’d put me on the road to getting tattoos, and got mad at me every time I came home with stamped hands.

Before 4th grade, I used a manual wheelchair.  Mr. Dave pushed me on the school’s then brand new wheelchair accessible playground, for which I gave my first public speech covered by local media.

He tried getting my parents to buy me kneepads, which didn’t work. I bet they didn’t want me crawling on the floor, ‘No daughter of ours…” I still crawled and just got rug burn.

He convinced my parents to send me to an overnight summer camp that his wife, Peggy, ran for kids with disabilities; I bet that was hard with my overprotective parents, with whom I had never been apart from at that time. I went for two summers before we moved, during which his youngest son annoyed the ants out of me—the first of the overly obnoxious male species I’d put up with.

But I had fond memories of Peacock camp—grabbing my wheelchair brake handle like a mic and singing “Oh My Darling, Clementine” at the top of my lungs (my music teacher would’ve been proud, hopefully), making new friends and frenemies, watching ’60s movies I would’ve never heard of, wearing my Tea Rose perfume everywhere to the point a counselor said she could smell it all over the pool and long after I left, winning the fastest pee-er award, and not knowing any better than to wear Hawaiian Tropic Tanning Oil for the coconut fragrances but still not burning since the sun and ozone were healthier back then.  I wrote my first not-for-school story, maybe making up how the camp was haunted, for the camp newsletter.

My sister still complains that she never went to camp. But then again, she didn’t have someone like Mr. Dave in her corner.

I don’t think I was ever the teacher’s pet, but Mr. Dave liked me enough to try talking my parents into moving to his neighborhood. What adaptive gym teacher wouldn’t like a competitive tomboy who crawled on the floor? I take that back, my 8th grade adaptive gym teacher and I clashed heads…a lot. Guess Mr. Dave was a hard act to follow. Gym class would never be the same without him!  Mr. Dave’s class was the only time I crawled at school.

NOTE: I never know how much of my childhood memories are accurate and my former teachers don’t always appreciate what I remember, but hopefully that’s not the case here.

Advertisements

What I Want on My Birthday

Besides ice cream, I want our 501(c)(3) non-profit cooperative housing for people with and without disabilities, Able Community, to thrive!

Able Community will crowdfund (think Kickstarter, etc.) to build capacity for more residents.

Can you donate anything / services for this fundraiser?  Or is there anything you want to see offered/auctioned?

Hope you all enjoy the last days of summer and are gearing up for fall, school, etc.!!

As always, old fashioned monetary donations to Able Community are appreciated!

 

Yours,

Esther S. Lee,

President of Able Community

Able Community Summer Shout-Out

Hope you’re enjoying the summer!  We are:

In a local writing workshop, I wrote despite all my failed endeavors, I’m starting Able Community to redefine independence by building co-housing for people with and without disabilities.  Feedback: “I want to know why this screw up is doing this.”

Here’s why:

Most of my highly educated friends with disabilities are unemployed or underemployed, and still live with their parents.  It’s disempowering when it’s because you can’t find and afford accessible housing and/or care, instead of just saving money.

Helping people with disabilities find individualized solutions to accessible housing, self-directed personal care, and community will enable equal access to meaningful opportunities, including paid full-time employment.

Able Community is a solution, but still has a long way to go.  We seek to equip people with disabilities with tools that will empower them, instead of facing failed endeavors, like I have.  We provided three young adults with disabilities with housing since we moved into a house in 2017, and need your help to make room for more people with and without disabilities to live in our house!

We’re not asking for monetary donations today, although you can still donate online.

BIG ASKs:

Can you or anyone you know donate unique stuff (artwork, recipes, sharing season tickets/airline miles, etc.) or services (tutoring, tours of your town, harmonica lessons, etc.)?  Able Community plans to crowdfund (think Kickstarter, etc.) and use your pledged donations as rewards or auction items.

If you shop Amazon on Prime Day on July 15 & 16, or on any other day, please shop via http://smile.amazon.com/ch/47-1913272.  AmazonSmile donates part of your purchase to Able Community!  Every cent makes a difference!!!

Thanks,

Esther S. Lee,

President of Able Community—Redefining Independence

esther@disabilitylawcollective.com

http://www.ablecommunitychicago.org

Happy Holidays 2018

 

It’s been a little over a year since we moved into Able Community’s house, and like most things, nothing comes easy for me. We found a great ranch house with sweet neighbors in a good location, but I am still struggling to find enough personal care assistants. Although we have a waiting list for residents with physical disabilities needing care, we cannot invite them without finding enough care for everyone.

Screen Shot 2018-12-25 at 12.43.57 AM

Me with my Buckley-Shaklee friends.  Photo description: 3 women pose in front of Able Community’s red brick house; 2 are standing behind a woman in a power chair.

However, in the spirit of Able Community’s mission—“redefining independence through self-directed personal care, employment, and community by building affordable co-housing for people with and without disabilities,” we are eagerly awaiting our first resident with an intellectual disability who’ll move in next week! To find out more about Able Community, visit www.ablecommunitychicago.org.

housewarming group shot

Able Community’s house warming party.  Photo description: friends and neighbors with and without disabilities pose for a group photo in a living room.

I never imagined Able Community’s house to be in Arlington Heights—where I grew up and my parents still live—because we planned for Able Community to be in Chicago. But as we looked for our starter house, we found that the suburbs provided more for our budget.


And yes, for those law nerds, Arlington Heights is in the Constitutional Law books as being racist for not allowing low-income housing. Ironically, as a kid, I was proud of Arlington Heights because of its diversity of housing sizes and was in denial when I learned of the case, that that Arlington Heights could be my Arlington Heights.

I unknowingly live in places that were part of big Constitutional cases. When I told a local Civil Rights Law Professor this (leave it to me to go to office hours long after I have graduated), he wanted to know where else I lived. In Skokie, where my family lived for the first ten years of my life, there was an ACLU case protecting Nazis’ First Amendment right to parade. Davis, CA, is also on the books for overturning affirmative action precedent in a case a white male student brought for not getting into the UCD Med School.

Hopefully, I didn’t bore my non-law nerd friends too much (one would probably see a town opting not to build low-income housing as harmless and a Nazi parade as something to stop, but it’s the other way around from legal perspectives). And my law nerd friends will be glad to know that Arlington Heights now has affordable low-income housing developments.


What co-op would be complete without a compost heap? So, I started one—much to my family’s dismay. I thought I had a 50/50 chance of compost success, but my sister gives it 70/30—70% chance it won’t work! We’ll see in a few months. I also started growing our first Venus flytrap, dubbing him King Henry Frankenweenie. He did eat a few flies for us and is currently hibernating.

fly

Photo description: a Venus flytrap in a flower pot.

When I’m not composting, I have been able to write poetry again, which comes harder with age, especially after my law school/California writer’s block. Whether it’s any good is another question, but I’m glad to be writing again.

I also attended my elementary school music teacher’s retirement encore concert. Mr. V was quite something, writing his own musicals with original music, and giving each student lines in them, including students with speech impediments.   As a kid from Skokie (a lower middle-class area) attending school in Northbrook (an upper middle-class area), I often felt out of place.   But I never felt out of place in Mr. V’s class or musicals. I think it’s clear where my love of musicals and treating everyone equally may stem from…

mr v

Me and Mr. V. Photo description: woman in a power chair posing with a man in a Hawaiian shirt.

ms stevens

Me and Ms. Stevens. my art teacher, who probably was instrumental in my wanting to be an artist as a kid. Photo description: woman in a power chair smiling with a woman.

I enjoy keeping in touch with former teachers, especially those I didn’t butt heads with too much, as I do most people. No, I was never the teacher’s pet, except maybe in 7th grade Spanish. I laugh at anyone who thinks otherwise, as the student who made a new way to kill a teddy bear keychain effigy of my high school Resource Teacher each week (my favorite, the guillotine). Bob, I meant to ship that teddy bear keychain effigy to you in pieces, but my college coursework got the better of me.

Bob has been an Able Community supporter from the get-go, making monthly donations.   On his visit to Able Community’s house, he revealed that my home high school never wanted me. My reaction? ‘I thought you knew I was smart’—a nicer way to say, No s#@&! I actually saw making me attend an out-of-district high school because of my disability analogous to segregated schools and wanted to sue my home high school. (Note: a lot of people, including attorneys, would disagree with this.)  Education for students with disabilities should consider the individual student for the most appropriate educational setting, but often is an all-or-nothing deal.

bob

Me and my high school Resource Teacher, “don’t say my name backwards” boB Carroll.  Photo description: a goofy looking man is leaning on a woman in a power chair.

I know I shouldn’t have taken it out on Bob, but I never saw or heard from the superintendent I wrote to to convince that I should go to my home high school.   Besides, Bob mostly deserved it… making me enter a banana eating contest and so on. I do hold most of my former teachers in high regard for helping shape who I am today.

I always pinpointed my wanting to pursue a legal career to an 8th grade unit on the Lindbergh Baby Kidnapping and what seemed to be an unfair trial that ensued afterwards. However, I just watched a documentary series, O.J.: Made In America, which made me realize how much impact watching the O.J. trial (also in middle school) had on me. Randomly, I experienced both in Arlington Heights.

orion

Me and Orion, my middle school friend.  Photo description: a person with a buzzed haircut kneels next to a woman in a power chair.

On my last legal note, I was honored to have co-written Reasonable Accommodations and Modifications: A Guide for Housing Professionals with the Illinois Department of Human Rights and Access Living attorneys. This Guidebook (accessible PDF linked here) provides general legal guidance to housing professionals on reasonable accommodations and reasonable modifications for residents with disabilities and their family members. Please share the equal housing love.

pic guidebook launch

Launching the Guidebook at John Marshall Law School.  Photo description: a panel of attorneys in suits sit in the judges’ area of a courtroom class.

This is a long way of saying Happy Holidays and drop me a line when you can!

Housemates with and without Disabilities Wanted

My nonprofit, Able Community, is looking for housemates, especially those willing to provide personal care for housemates with disabilities in exchange for free rent!

Able Community is taking applications for residents and personal care assistants for its first house in downtown Arlington Heights, a ~35 minute express Metra train ride to downtown Chicago, with access to public buses and accessible dial-a-ride township vans.

Apply on: http://bit.ly/apply2AC

 

 

Quoting “Too Late to Die Young: Nearly True Tales from a Life” by Harriet McBryde Johnson

Harriet McBryde Johnson (1957 – 2008) was an American author, attorney, and disability rights activist with muscular dystrophy and a wicked sense of humor.

hjohnson

Harriet McBryde Johnson sits in her power wheelchair with one hand under her chin. She is behind a desk with neatly organized papers and books. There is a computer next to her side.

I’ve had a lifetime against saying “They mean well” of telethons and the people who love them. In my childhood, telethons were ubiquitous. Easter Seals sponsored the separate-and-unequal crip school I attended. United Cerebral Palsy bought equipment for some of my friends. March of Dimes declared it would “Stamp Out Birth Defects!”—a slogan that made us defectives nervous. They all wallowed in pity, depicted disability—“crippling” they called it—as the worst fate imaginable. They all assumed the only answers were prevention and cure. In most ways, one thon was like the next. But in one way, MDA stood out from the pack. Its pitch had added a punch of urgency; find a cure before they die!


Are you a Jerry’s kid or Jerry’s orphan?

jerrys kid

People with disabilities protesting against the MDA telethon.  An older woman who is in a power wheelchair holds up a yellow sign, saying “I’M A FORMER ‘JERRY’S KID’ STOP THE PITY PARTY.”

Here’s a video to elaborate on the Jerry’s kid/orphan analogy: https://www.youtube.com/watch?v=5tM4tTUMwGE  Jerry refers Jerry Lewis, the MDA telethon’s former longtime spokesperson.


I wonder if the post-ADA generation of people with disabilities, including myself, are becoming too complacent.  For instance, as someone with a “preexisting condition,” I am very concerned about the pending changes to healthcare.  Yet, I am not protesting or calling my legislatures.  I know how bad this sounds, especially for someone who has interned at political offices.

I respect those who are on the front lines protesting and calling.  But perhaps I am too jaded to think that we can change our pending doom or even that our governmental system actually works.  Any thoughts?

Farewell to Amber: Loosing a Close Friend

Dear Amber,

Like most things in our friendship after college, this comes late, drenched in procrastination. Like how you almost never replied to my e-mails despite being an advisor to Able Community (the non-profit housing cooperative we were starting together), even though I know you read every word I wrote.

amber skype

Amber, Carmen, and I on Skype for an Able Community meeting.  Photo Description: A screenshot of a video chat between 3 young women in power wheelchairs from 3 different locations.

It was so easy in college, when we lived in the same dorm. We could talk while we ate about the most random things (like how you named each of your boobs) and I could barge in your room to ask you something whenever.

We talked on AIM after we both graduated, commiserating in our mutual miseries—my hatred of law school and the challenges of having to depend on my mom for my personal care again, and your frustrations of having to live with your parents because you couldn’t find enough personal care assistants in Chicago for grad school. I guess we both got busy and I stopped using AIM, so our contact dwindled.

With the exception of one year in fifth grade when we moved to a new neighborhood and everyone in my new class wanted to be my friend (don’t ask me why), I was never in with the cool kids. Even in college when I lived in a dorm with a majority of students with disabilities needing personal care and a few live in personal care assistants students, I never quite fit in or was popular.

You never made me feel excluded or that I wasn’t cool enough to be around you, although you were a grade younger than I was and one of the cool kids of the dorm. I would go watch movies in your room after you got into bed and asked if you needed anything as I wheeled out. When I said that I wanted to smoke pot before graduating, you agreed and made it happen.

I was surprised at the connections to “the good stuff” that we already had in the dorm and that I was able to inhale from the pipe, as a group of us took turns inhaling from it outside on the patio of our dorm. I’ll always remember that one of the personal care assistants helping us answered her phone, saying “I’m helping the gimpies smoke pot.”

I was surprised that you talked about our first time smoking together in front of your mom years later when we went to a mutual friend’s house for a party; somehow it felt like the years we didn’t see each other vanished and we just continued where we left off. My parents would still kill me if they knew about this; they even oppose medical marijuana. Good thing they don’t read my blog.

I can’t believe that it’s been almost 2 years since I was on my way to see you because you were in the hospital for pneumonia when your sister e-mailed me not to come; it was too late. I got that e-mail the day before I was going to visit you with flowers, right before my meeting in Springfield. I really regretted waiting to visit you when I was conveniently in the area for my Springfield committee meeting to see you; I still do.

I didn’t think it was that serious and even jokingly e-mailed you weeks earlier that I thought I was dying when I had pneumonia, but that I was sure you’d pull through; I shouldn’t have joked like that. Honestly, when I met a group of our college friends I saw when I visited Chicago, we’d go over a list of our friends who we were concerned about health-wise and your name was never on the list. Even though we knew that you had muscular dystrophy (MD), a genetic disability that’s progressive and can result in an early death, you seemed strong. You were healthier than I was in undergrad, I was always getting colds and what have you while you never seemed sick wearing a college hoodie instead of a coat in the winner.

When I decided not to write another blog post or edit another video until I posted yours, I had no idea that it would take me so long. Part of it was probably unconsciously choosing to delay dealing with the finality of your death, and part of it was wanting to caption your video so it would be accessible to everyone. When I finally decided to post it for your family without the captions, I lost my Macbook battery power charger that had the video on it and my Youtube password. I finally bought a new charger and found the password… I sent it to your family a week ago and I finally figured out the captions!

Here’s the link to the video: https://youtu.be/CTnulPHgMVM.

Watching this video interview we did the last time I saw you a year before you passed away made me regret not asking you more important questions, not just promoting Able Community… like about your Ph.D. dissertation, your work in DC, your everyday life. But somehow, this video, despite all of this, seemed to immensely touch your family. In my Korean culture, a friend’s family becomes my family. So in that tradition, I’ll consider your family like my own. In fact, your sister is helping me go to Springfield because my sister cannot.

Your mom wanted to collect what everyone said at your memorial into a book. Here’s what I wrote for your memorial:

I remember the good times I had with Amber in our undergrad dorm, Beckwith Hall, when I would go watch movies with her late at night after she was in bed, our liberal talks, and scheming to go to Korea together. We were one of the few students at our dorm and at the campus at large who adamantly opposed Chief Illiniwek, as a racist Native American mascot.

Although Amber was a grade younger than I was, she was a cool person I wanted to hang out with more. I remember when we were both in undergrad, she invited me to see a young state senator she had a crush on. I wanted to go, but I didn’t because I had too much homework. I’ve always regretted not going to see the politician, who would later become our first African American President. Amber was always ahead of her time.

During my senior year, when students took to the streets after the basketball team lost to University of Michigan, Amber and I joined them. We rolled towards Wright Street, as hundreds of Illinois students were walking in the street, angrily chanting obscenities at Michigan. We saw the mob congregated at the alma matter, which some students were climbing. And headed back to our dorm, where my night personal assistant was annoyed that we were late, but it was so crowded we couldn’t have gotten back any faster.

Before graduating, Amber joked that she would follow me to grad school in California, where I was going to law school, and steal all of my personal assistants. We both had difficulties upon graduating undergrad. Amber returned home from starting grad school at UIC with challenges finding personal assistants while I had problems with accessible housing and personal care. Amber and I commiserated with each other over AOL instant messenger during this time.

I last hung out with her last year when I visited campus. She was always great about being interviewed for my various video projects, so I interviewed her for the second time in her Daniels dorm room. Before the interview, she expressed some annoyance at me that the video from the first time I interviewed her was still being shown in disability studies classes. Apparently, someone recognized her as the angry radical in the documentary we made in undergrad. I don’t agree with the angry part, but she was a great progressive advocate for social justice across the board.

She led such an amazing and bold life. I was in awe of everything she accomplished, her values, and international travels. I appreciated that she believed in disability rights and independence so much that she wanted to help with Able Community, a housing cooperative for people of all abilities that we are starting. Amber was on our advisory board. I’ve just been appointed to the Illinois Statewide Independent Living Council, and told Amber I was going to nominate her to the Council since she was so perfect for it. She was extremely excited about it. Amber is someone I immensely respected. I will and do really miss her. I will remember her whenever I visit the university and continue our disability work.

I still miss you, Amber.

 

Much love,

e