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!!!
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.
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.
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.
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??
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.
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.
The following is from my annual holiday update to my friends.
A blue postcard says “Happy Holidays” in the center with white snowflake stars. This image is from this e-card link.
I dreaded writing this year’s update. Although I was appointed as co-chair for the Women’s Bar Association of Illinois’ Attorneys with Disabilities Committee and a member of the Statewide Independent Living Council of Illinois (SILC), I haven’t been as productive as I would like to have been this year. I’m so used to doing everything at 90 mph that my slower pace is hard for me to get used to.
Another SILC member I just met worked at the University of Illinois when I was a freshman. When I asked her why we never met before this year, she replied that she saw me but she could never catch me because I was too fast. So perhaps there are benefits to living a slower pace. Please forgive me if I was going too fast to be there for you. I’m definitely here now if you need me.
Last December, I was just ending my pro bono work with the Legal Council for Health Justice, or the organization formerly known as Aids Legal Council of Chicago, which was a fantastic six months of hands on experience with Social Security matters directly from the Executive Director. I was enthusiastic to launch my own law practice, the Disability Law Collective, with the assistance from my legal incubator program. I soon realized that successful self-employment requires more than shared office space, particularly as a person with a disability. I did get my first case through Access Living and am eager to grow my practice.
I see improving independence and employment for myself and others with disabilities as the reoccurring theme of my work and my ultimate life goal. Able Community is the non-profit housing cooperative for people with and without disabilities that I have been working on with a fantastic group of people, who all happen to have disabilities and are all graduates from the University of Illinois Urbana-Champaign. Our Able Community members are working towards improving independence for people with disabilities, personal assistants, and their families.
Able Community is not having a fundraiser this year because we are working on our 501(c)3 incorporation; we are extremely close to filing the application. I realize that I’ve been saying this for a while, but we have just submitted our materials to our non-profit pro bono attorneys and our next step is filing the application. We will have more fundraisers once we file for our 501(c)3 status, so we can provide tax deductions. If you still want to donate to Able Community anyway, we would of course gratefully accept your generosity; here is a link to our PayPal info on the bottom of this hyperlinked page. We are incredibly grateful for everything our supporters have done for us already.
(In case you missed it, above is our fundraiser video from last year. It explains what Able Community is and who the members are better.)
I consider myself so blessed to be back home in Illinois, near the city I love and to be closer to the other Able Community members. As someone who pursued a legal career to practice civil rights and fight racial injustices, I am appalled by the recent police brutality incidents. I am conscious that the systematic violence and racial inequalities deeply rooted in our nation’s history call for even greater collective systematic change at the city and national level. I have also come to realize that the everyday injustices are just as important to advocate for as the systematic ones and I hope that my law practice, the Disability Law Collective, will meet the everyday legal needs of the disability community.
(A sneak preview of Disability Law Collective’s animated promotional video.)
I also feel blessed to be back, closer to my friends in Illinois, to celebrate life’s happy and sad moments together. I lost 3 friends this year. While this comes with being a part of the disability community and I have lost schoolmates from an early age, I don’t think I will ever get used to it. I’m sure that my losses do not remotely measure up to what the families who lost their loved ones with disabilities or the teachers and professionals who continuously loose people with disabilities they work with must go through.
Having said that, I believe it is wise to make legal preparations so your loved ones and family know what your final wishes are. This can be done through estate planning, including wills, and medical and financial powers of attorneys. I’d be happy to help you figure out what legal options meet your needs and if for some reason I cannot (I’m only licensed to practice law in Illinois and California), I’ll be happy to help find someone else who can. And please let me know if there is anything else I could help you with, legally or otherwise.
I have been enjoying Chicago. One of the Able Community members would marry football if he could, whereas I would definitely marry Chicago. My sister and I have been doing the touristy things that we never did before, like architecture tours. We’ve also been going to Broadway musicals. I’m really glad that my love of musical started in an early age (thanks to my elementary school music and art teachers). I did subject to my whole law school to this love by making many of the professors and students participate in my law school musical production during my last year.
I’ve also taken up some inherently dangerous adaptive activities, including water skiing and alpine skiing (I’m sure some of you would love to throw me off a mountain). It feeds my rebellious-defying-what-people-say-I-cannot-do-because-of-my-disability spirit. Similar to the teams of people assisting people with disabilities find independence through sports traditionally meant for able-bodied people, I am excited to be a part of teams advocating for the independence for people with disabilities through the Disability Law Collective and Able Community.
(Photo with the crew of volunteers who made sure that I didn’t kill myself my first time skiing.)
I am taking better care of my health with adaptive yoga and horseback riding. I look forward to adding adaptive scuba diving to the list of my inherently dangerous adaptive adventures. Perhaps I am training to be the next James Bond… I know that I am not an attractive British able-bodied man. But how cool would it be if there was a movie with a female spy with a disability who is a person of color?!?
Happy Holidays, but especially a very Merry Christmas and a Happy Hanukkah (showing my Judeo-Christian biases)!
I am amazed that the mad rantings of this Gimpy Law attorney actually has readers, let alone that it has so many readers around the world. Here’s a summary of the Top Views by Country in the history of GimpyLaw, as of today:
253 United States views. 6 Canada views. 4 South Korea views. 2 Malaysia views. 1 Morocco view. 1 Philippines view.
In one of my college Rhetoric classes, Expository Writing, we read an essay about how a writer wanted to hand deliver individualized messages to each of her readers, old school Pony Express style. I wish I could get to know each of GimpyLaw’s readers, their unique stories, what draws them to this GimpyLaw blog, and our communities, whether they be disabilities or ties to advancing justice.
But perhaps I should introduce myself first. I’m a 30ish Korean American women with a disability. I’m originally from the Northwest suburbs of Chicago, but lived in California for 9 years, where I went to law school at UC Davis. I recently moved back to Illinois to participate in a program that will help me start my own law practice. I’m also starting a non-profit housing cooperative, called Able Community.
That’s enough of a dating service description about me; I do not like long walks on the beach, by the way. I’d like to hear about you, my readers. Feel free to drop me a line in the comment section below!
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