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

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.

joy ski

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 4th of July, since we’re working to improve people with disabilities’ independence.  But we settled on July 6th 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

ac house

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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