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.

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Happy Holidays 2017

Christmas tree

Picture of Esther: a woman in a wheelchair is in front of the Christmas tree at Millennium Park in downtown Chicago. 

It’s been a remarkable year.  I’m making progress improving my pain and right foot.  Disability Law Collective, my law practice, started earning more than its expenses with clients and I am finishing my reasonable housing accommodations and modifications guidebook collaboration with Access Living and the Illinois Department of Human Rights. My former Access Living supervising attorney asked me to work with them because I write well.  Let’s hope they still think that!

It was also a momentous year for Able Community, my non-profit housing cooperative for people with and without disabilities.  We officially received our 501(c)3 status, found a house to live in together, and moved in last month!

housewarming group shot

Group picture from Able Community’s housewarming party: some guests with and without disabilities gathered in Able Community’s living room. 

I have a great housemate, Thomas.  We met through a mutual friend, T.J., who I played boccia with when I was in high school.  I discovered after we moved in together that Thomas knew of me for years.  Apparently, T.J. talked me up regarding my boccia abilities.  I could’ve been a contender, but instead, I chose to be studious so I could be an attorney.  Thomas regrets not being able to compete against me while we were both in our primes.  It’s funny how much we have in common, including having the same doctors… a CP connection.

Able Community housewarming

Thomas and Esther’s first meal together at Able Community’s house!  Fish and chicken tacos.

Despite all of these accomplishments, I can’t help feeling discouraged because I am still struggling to find personal care assistants.  We had a number of applicants with disabilities needing personal care and planned to select another resident needing care after I established my own care, so we can share this care.  This is why the delay in finding enough assistants is particularly hard for me.

We found a solution.  We will renovate the basement so that it can attract personal care assistants to live there, or be rented out to offset our care costs.  We are raising $16,000 to enlarge 2 basement windows as fire escapes.

Here’s my housewarming speech, in case you missed it:

We raised $2,799 from Giving Tuesday and our housewarming party, thanks to our generous friends!  Able Community sure has come a long way from our first fundraiser for $800 for our website and incorporation expenses.  Here’s a blast from the past fundraising video:

We definitely have a ways to go before we reach our $16,000 basement window repair goal, so we can provide exceptional housing for people needing and providing care.  If you haven’t donated, please donate to Able Community on www.ablecommunitychicago.org/donate/!  It’s not too late to make your tax deductible donation count towards your 2017 taxes!

I’m also continuing to look for personal care assistants.  If you know anyone who might be interested, please send them my e-mail address below.

I first started my annual holiday updates during my first year of law school.  That was a very challenging year for me having to establish my personal care in California during the pressures of 1L classes and being horribly homesick for Illinois.  I guess I have come a long way, but I still have a long way to go.  Please drop me a line.  It always brightens my day to hear from you!

Happy Holidays,

Esther S. Lee,

Attorney at Law

Disability Law Collective: affordable legal advocacy for people with disabilities’ everyday legal needs.

esther@disabilitylawcollective.com

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.


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

The non-profit I’m starting, Able Community, needs your help!

Dear Gimpy Law Readers,

I wanted to share about the non-profit I’m starting, Able Community. Watch this video, then read the e-mail below to find out more!

Able Community is building the first fully accessible, affordable, and intentionally inclusive cooperative housing for people with and without disabilities in the United States. Beginning this holiday season, we are asking for your help! Please consider donating to Able Community’s Every Dollar Counts campaign, our very first fundraiser.

It is extremely difficult for people with disabilities to find affordable and accessible housing, and personal care, which affects our independence and employability. Able Community is creating an alternative to institutions and living with family for people with disabilities, while improving personal assistants’ quality of life and compensation. Our members will run and operate this collaborative housing cooperative and personal care services to meet these unmet independent living needs. We will be located in Chicago, because of its employment potential and accessible public transit, with approximately 20 various sized apartment units, some offices, and shared common space for people with disabilities, personal care assistants, and their families.

All of Able Community members have disabilities and/or work with persons with disabilities, so we are passionate about the need for this innovative solution and we have creative ideas about how to accomplish it. We have been meeting weekly, investigated the lack of other living situations, drafted our founding documents, and are in the process of incorporating.

In order to make the Able Community a reality, we are raising $800 to incorporate as a non-profit and for our website. We need YOUR help; a donation of $10, $25, or $50 will help us get there. With your support, Able Community’s housing co-op will become a reality.

Every dollar will have a meaningful impact on our work doing—redefining independence for people with disabilities. Able Community believes that Every Dollar Counts. Instead of sending a Christmas card or buying us a cup of coffee, contribute a few dollars to our cause and contribute to changing lives – and ultimately the disability community – forever.

To find out more and donate online, go to AbleCommunityChicago.Org, click on the donate link below, or make a check payable to Able Community. It would be helpful if you have a PayPal account, but we welcome donations in any method.

Thank you in advance for your support of Able Community!

 

Happy Holidays,

Gimpy Law Blogger, on behalf of Able Community.

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