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.

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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

 

 

Support my 501(c)(3) Non-Profit: Attend Able Community’s Mad Hatter Tea Party Fundraiser!

Sunday May 20th at 2pm

123 S. Belmont Ave. Arlington Heights, IL

Suggested donations: $20 per adult and $10 per child
Donate in advance to RSVP on http://www.AbleCommunityChicago.org/donate
or RSVP to esther@DisabilityLawCollective.com or text (312) 772-6828

Dressing up like Alice in Wonderland characters is encouraged!

Food provided by our event sponsors:
Armand’s Pizzeria
Sweet T’s

Enter for chances to win gift certificates to local businesses:
La Tasca Restaurant, Cortland’s Garage, Dave’s Specialty Foods Cooking Class, etc.

All proceeds will go to Able Community, a 501(c)(3),
providing inclusive housing for people with disabilities. http://www.AbleCommunityChicago.org

 Slide1Dear Reader,

I’m writing to invite you to my non-profit, Able Community’s Mad Hatter Tea Party Fundraiser on Sunday May 20th at 2pm.  It will be held at 123 S. Belmont Ave. in Arlington Heights.

Able Community is a 501(c)(3) creating housing to improve people with disabilities’ independence.  We just moved into our first house in November and are the only accessible, intentionally inclusive cooperative housing in the United States seeking to provide personal care services to people with disabilities.

Our mission statement is redefining independence through self-directed personal care, employment, and community by building affordable co-housing for people with and without disabilities to create an alternative to living in nursing homes and depending on family for care.

We are having this fundraiser to raise money to enlarge 2 basement windows so they are up to municipal codes and can be used as fire escapes, so that our caregivers can live there, or so it can be rented out to offset our care costs. All of the proceeds from the tea party fundraiser will go towards this need.

We can’t do this without you. It will cost $16,000 to enlarge 2 basement windows (or $10,000 for one window) as fire escapes.  We have already raised $3,000 towards this goal.  We need your help reaching our goal!

Please contact me at the e-mail below with any questions or to RSVP.

Sincerely,
Esther S. Lee
President of Able Community
123 S Belmont Ave, Arlington Heights
(312) 772-6828
esther@disabilitylawcollective.com
http://www.ablecommunitychicago.org

 

 

Moving Mountains: Assistive Technology as a Means Towards Independence

It’s no big secret that I have been opposed to using communication devices pretty much my whole life—that is, until now. My cerebral palsy affects my speech and mobility, but not my spirit. Although it is difficult for many people to understand my speech, especially before getting to know me, I preferred repeating myself a few times over using a communication device because that was more efficient. There wasn’t a communication device that matched my comprehensive vocabulary and my slow typing speed made the process too slow.

When a friend told me about eye gaze technology, I was really excited. It was getting harder for me to type, so I was looking for alternative computer input methods. I tried a few devices and found the Tobii worked for me and it was covered, for the most part, by insurance.

The first time I got a Tobii was in 2013. Unfortunately, due to a mix up with my new wheelchair arriving after my Tobii warranty expired, I was never able to mount my Tobii on my new wheelchair, or any wheelchair for that matter. While the Tobii representative was gracious enough to let me borrow her table mount for an extended time, I could only practice talking to myself for so long. I did practice every morning for ten minutes at my home desk, where the table mount was set up and stayed, but then, I went about my day, which involved meeting people and attending events or appointments outside of my home.

The mount ordered with my first Tobii was a regular 7 shaped arm mount. I guess they didn’t get much consumer input (if any) designing or improving it, and that mounting technology had not advanced at all since the 80’a with my first communication device that I didn’t really use as a toddler. Due to my spasticity and lack of fine motor skills, I could never use these types of mounts myself. This might have contributed to my hatred of communication devices since I had to rely on others to move it, and take it on and off; being ‘confined to a wheelchair’ had a whole new meaning—since I couldn’t independently get out of my wheelchair when that mount was attached (NOTE: being ‘confined to a wheelchair’ is considered derogatory).

The second time I was evaluated for another Tobii-like device (I found another device, the Accent by Prentke Romich Company worked better for my spasticity, but got another Tobii because my insurance covered it), I expressed my frustration at the old mounting system that was still being used today to my occupational therapist. She told me of a mount she thought I could use independently. I was immediately intrigued and fell in love, even before seeing it in person. It was the Mount’n Mover, but what I heard was “Mountain Mover,” which I thought was a fitting name if I could really use it by myself.

Esther S Lee Mount'n Mover outside

Photo Caption:  Esther (me) using a Tobii mounted on a loaner Mount’n Mover in the backyard.

I fell deeper in love with the Mount’n Mover during a trial and am currently in the process of getting my own. In addition to being able to move the mounted device myself to transfer independently and/or access something else on a table, I can independently put my device and the mount on/off myself. This was something I never fathomed being able to do. I was able to take my communication device on the Mount’n Mover everywhere; to my doctor’s appointment, a writing group I participate in with local creative writers, and a meeting with Able Community’s supporters and a contractor renovating Able Community’s house. It’s amazing how much impact pieces of metal and plastic can have on one’s independence and empowerment.

I am an attorney, licensed to practice in Illinois and California. I recently opened a virtual law practice, called Disability Law Collective, (http://www.disabilitylawcollective.com). It is an affordable, socially conscious law practice advocating for people with disabilities and their families’ everyday legal needs.

I am also the president and founder of a 501(c)(3) non-profit housing cooperative for people with and without disabilities in the Chicagoland area, called Able Community, (http://www.ablecommunitychicago.org). It will be the only fully accessible and intentionally inclusive co-housing in the United States. Able Community’s mission is redefining independence through self-directed personal care, employment, and community by building affordable co-housing for people with and without disabilities to create an alternative to living in nursing homes and having to depend on family for care.

Esther S Lee Mount'n Mover house renovations

Photo Caption:  Esther (me) talking to a co-op mentor during the renovation of Able Community’s house with a Tobii mounted on a loaner Mount’n Mover.

Improving people with disabilities’ independence seems to be the common thread of my life’s work. I am often so engulfed in advocating for others’ independence that I neglect to think about improving my own. I am glad that I found the Mount’n Mover, so I can really start moving mountains, both for others as well as for myself. Now, I just have to work on the funding for it, since I just discovered that my insurance will not cover it.