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 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
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,