EXTRA, EXTRA! An Extra Exciting Summer Update.

I know, I know.  It’s not December, when I usually send my annual holiday update.  But I have such exciting news that I couldn’t wait.  I’ll save it for the end to escalate the anticipation.  Hopefully, you’ll make it that far down.  There’s a surprise; so don’t miss it.

Quick health update since I mentioned it in December and friends keep asking why I am not coming out to play:  I have cerebral palsy, a physical disability.  It’s hard to explain CP because everyone’s CP is different and I ironically don’t know that much about it.  Yes, that guy on the Speechless show has it.  My CP makes the me spastic, basically, I have too much movement I can’t control, as some of you who have walked up from behind me may have noticed my startle reflex with me jumping five feet out of my wheelchair.

Anyway, I’m having too much tone in my right foot.  It feels like I have a lot of trapped energy and movement, which is making it harder to walk on, even assisted.  I’m working with doctors to find the right treatment.  Don’t worry; I guess this happens to many people with my type of CP, especially as we age.  I am doing a lot better than before, when I even had difficulty sitting in my wheelchair from the tone; funny how just a foot can make a big impact.  Doctors never seem to know what to do with me, but they are trying.  I’m a bit of an anomaly across the board, including in medicine too… they don’t know why it’s only one side, but I am thankful that it is not both feet.

Despite my tone, I was able to hit the slopes.  Unfortunately, not with my Midwest friends this year, but out West, during our family’s spring break.  Yes, they were very annoyed and I am not sure that they will ever take me again since we almost didn’t make it back. It started snowing while we were coming down the mountain and my dad insisted on driving down.  We skidded off the detour and got stuck on the edge of a cliff until someone towed us out.  I thought it was humorous, but no one else did.  It was one in a series of many unfortunate travel events during that road trip.

I tried the world’s only joystick operated ski through the University of Utah’s TRAILS program.  Dr. Jeff Rosenbluth envisioned it for people with spinal cord injury (SCI), having been an adaptive ski instructor before medical school.  Why can’t I have a cool doctor like that?  He even came to ski with me on the first day.

Picture of me skiing in a joystick operated kart ski in Utah on a snowy mountain.  There is a man behind me holding on to a rope connected to my ski for good measure.

They were excited because I was the first person with a disability besides SCI to try it.  I also discovered that I was the first woman (go girl power!), so they let me go faster than they let anyone else before (being short finally paid off!).  It was the fastest I’ve ever skied, so of course, I loved it!  I surprisingly didn’t crash; I almost did at least twice misjudging a snowbank on a turn.  But Dr. Rosenbluth was strong enough to stop me.  Apparently, it hurts more than wiping out on a regular sit ski, which I have done.  I’m glad that I didn’t find out how much more it hurts.

So the real exciting news…  Drum roll please.  Able Community, the housing cooperative for people with and without disabilities that my friends and I have been working on, has finally received our 501(c)(3) status!

We were waiting to tell everyone formally until we got the green light from our Perkins Coie pro bono attorneys to officially solicit tax deductible donations.  And guess what?  We made a video to say that your donations will now be tax deductible; and if you filed an extension, you can deduct any donations you made in 2016!

It is fitting that we send out this update in July.  We had our first Able Community meeting in July, before we even had a name for it.  I really wanted to have that meeting on the 4^th of July, since we’re working to improve people with disabilities’ independence.  But we settled on July 6^th instead.

For you Amazon.com shoppers, 0.5% of your purchases can be donated to Able Community at no additional cost to you.  You have to set your donation preferences on smile.amazon.com and remember to make your purchases through smile.amazon.com.  Here’s the link: https://smile.amazon.com/ch/47-1913272

More exciting news… Able Community is this year’s recipient of the Berkeley Student Cooperative co-op development grant!

And extremely exciting news.  Able Community found a house to rent in downtown Arlington Heights (a Chicago suburb) to start living in together!!!  We are looking for more housemates with and without disabilities, and personal care assistants (both live-in and hourly PAs) if you or anyone you know are interested.  Please forward this application link to anyone who may be interested: http://bit.ly/apply2AC

Picture of Able Community’s red brick house with a ramp being built for the front door.

We are currently waiting for the renovations to make it accessible before we move in.  We plan to host an open house hopefully at the end of August and many get-togethers there that we would love to see you at.  Let me know if you are interested in attending.

We hope you enjoy our video and consider donating to Able Community, a 501(c)(3) housing cooperative for people with and without disabilities, so we can really start doing amazing work.  You have donate through the link on the video or through our link here: http://www.ablecommunitychicago.org/donate/ or if you want to send a check, I’ll give you our address.  Your donations will help us furnish our empty house and other household needs.

Until more good news,

Esther S. Lee,

esther@disabilitylawcollective.com

Able Community

http://www.ablecommunitychicago.org

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Holiday Update in July!

I had trouble posting my annual holiday update e-mail on this Gimpy Law blog in December. I thought it was a sign that I should wait until my post about my friend, Amber, who passed. But here’s my holiday update in case you missed it. If you want to be on my e-mail list, leave me your e-mail address below.

Happy Holidays 2016!

Dear Friends,

I hope this finds you well and enjoying the holiday season.

I love how the Cubs won the World Series after my family and I moved back to Illinois. Pure coincidence??

A Happy Holidays from Chicago card shows people engaged in winter activities in the city. This card is available for purchase at hellolucky.com/city-cards/hl-805-happy-holidays-from-chicago.

Able Community is well on its way to becoming a reality.

This photo is from Able Community’s 2015 Korean BBQ. A young man is sitting in a lawn chair in the front, four people with electric wheelchairs are behind him, and six personal care assistants are standing behind them. Two assistants are giving another assistant bunny ears. They all look content and full from the BBQ.

I just sent our non-profit attorneys the signed 501(c)3 application for the accessible housing cooperative that my friends and I have been working on. We will be able to provide tax deductions for your donations once we are approved.

Thanks for everyone who continues supporting Able Community through donations, attending our meet-up events, and keeping us in your thoughts. Stay tuned for Able Community’s big and exciting upcoming plans.

AbleCommunityChicago.org

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It’s been a tough year for me personally. Although I had chronic pain for a while now, I am losing some function—my ability to walk with assistance. It’s been especially hard on my family, who never fully accepted the fact that I had a disability in the first place. It’s funny how amazed people are when they discover I am able to walk at all; one law professor looked so stunned by me walking with my assistant down to the then inaccessible law school courtyard that I doubt I could have done anything academically to get a similar reaction.

I usually refrain from discussing my health to avoid seeming less capable (is it strange I think this?) and because I don’t want my friends to worry (I supposedly have a “normal” life expectancy, whatever that means). Don’t worry, I found some amazing doctors here, which is saying a lot because doctors and I usually do not mix well. As my PM&R Doctor said, the years of using my body in ways most people do not caught up to me. So, I guess it’s a part of aging with a disability. If anyone also has experienced increased tone with cerebral palsy, I’d love corresponding.

Also, in addition to missing friends who have passed away previously (I was waiting to update my newsletter with a post about Amber, my friend who passed away last year, but it’s been hard for me to do), I recently lost a dear former college professor, who was also my favorite poet. She put up with my endless e-mails although she was not fond of that form of communication and she helped me survive law school, even though she previously tried talking me into pursuing creative writing instead. Having said that, I encourage you to tell your loved ones that you love them while you can. I heard the act of saying something makes it more real.

My professor’s name was Brigit P. Kelly, if you want to read her books. I’m always surprised at how many people have never heard of her. Here’s her Amazon Author Page.

In exciting news, I am working on a legal guidebook regarding reasonable housing accommodations and modifications with Access Living and the Illinois Department of Human Rights. We hope it will enlighten housing providers in working with people with disabilities in Illinois.

I am hopeful that I can still squeeze some adaptive alpine skiing in this winter. Stay warm and drop me a line when you get a chance. I love hearing from you.

Warmly,

Esther S. Lee

esther@ disabilitylawcollective.com

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.

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!

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

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.

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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?