It has been and continues to be an honor to facilitate the Disabilities and Conditions of Aging Network focused on issues and activities that impact the Disability Community in Indiana. April’s session had a loose agenda, giving each organization present the opportunity to share their updates. Included in the video is information pertaining to upcoming meetings where you can get questions answered regarding the unwinding of the Public Health Emergency and it’s impact on Medicaid and Medicaid Waiver Services for people with disabilities and conditions of aging.
To connect to the “Ask the ARC” webinar series to get answers about the unwinding of the Public Health Emergency and its potential impacts on the Disability Community, and other issues follow the link. FYI, the May 11th session will focus on the PHE: Webinar Registration – Zoom
If you are interested in future meetings of the Disabilities and Conditions of Aging Network, please email me at [email protected].
Towards the end of March, I noticed a headline about a Civil Rights Activist suing a Hotel for ADA violations who was arguing her case before the Supreme Court. I read the article and found myself, once again, realizing how much my perspective on our world has changed since I lost both of my legs. When I worked in the hotel industry, the Americans with Disabilities Act was barely mentioned in school or workplace training beyond understanding what’s different about the “handicapped rooms” (a term that now aggravates me beyond belief) and where the “handicapped parking” is located (same aggravation, though I once casually used these terms myself with careless abandon). There was no emphasis placed on why we were required by law to have these features. There was no attempt to empathize with the travelers whose civil rights these features are meant to protect. There was, by and large, no exploration or education in accommodating diverse disabilities in the public hospitality environment.
The next morning, I received a message from a friend in Colombia who knew I used to work in the Hospitality Industry. He had seen the same article and asked if I’d be willing to share my thoughts as both a person with a disability and a former hotel manager. The Saturday after the US Supreme Court was supposed to hear the case, I sat down and recorded my opinion over zoom. I have since been watching for confirmation that the hearing happened but have found nothing. It does appear that there may have been a continuance issued for the time being. The last thing I found said that the case had been added to the Supreme Court’s docket and would be heard in the fall with a decision expected early next year.
Completely unaware of how long I was going, I spoke for over 20 minutes. My friend edited it down to about 14 minutes, which you can watch in the video below. I cover most of the details in the video, but to make a long story short, a woman who is blind and uses both a cane and a wheelchair, tried to make a reservation at a hotel in Maine, but they didn’t have accessible rooms in their online inventory for reservation over their website. On the surface, this appears to be a violation of the 2010 updates to the American’s with Disabilities Act. (When the hotel was built and when/if any major updates have taken place does impact that). I don’t have that information, but the plot thickens in that the Plaintiff has filed over 600 similar lawsuits against hotels around the country. The hotel company involved in the current case claims that the Plaintiff had no intent to stay in their market and was just looking for someone to sue, so has sustained no actual injury. The case was initially thrown out due to lack of standing, but the appeals court recognized her right (and I would argue her responsibility) as a Person with a Disability to enforce the ADA. That’s how the case has come before the US Supreme Court, for a final decision on her right to sue the hotel for ADA violations, regardless of her intent to stay at the hotel or in their market.
I do hope that you take the time to watch the video. Please know that over six minutes were edited out. Missing from the video is a statement regarding how I feel about the way the Plaintiff has chosen to go about holding hotels accountable for complying with the ADA. I don’t like the concept of “drive-by lawsuits”, which this certainly feels like, but when you look at it from the perspective of someone with a disability looking for a hotel room that can accommodate them, the more accessible the hospitality industry becomes, the easier it will be for people with disabilities (who make up a quarter of our population) and their families to travel. I have chosen to go the route of offering consulting services to help the hospitality industry, and really any organization that serves the public sector, to embrace and adapt to Accessible Diversity, Equity, Inclusion, and Belonging as a vital aspect of their business operations, which will help avoid ADA related lawsuits. Sadly, my experience so far has shown that more businesses would rather risk a potential costly lawsuit than invest the money upfront in training and modifications that would avoid the high dollar damages and settlements. Please refer any organization you encounter who could benefit from this kind of evaluation, consultation, and training to reach out to me at [email protected].
Starting off the last week of Disability Awareness Month, I give you a glimpse into what dating with a disability looks like… The picture below, taken 8 years ago, shows Irena and I in a lazy river, with her youngest son floating nearby. She had taken her kids to the Abe Martin Lodge for the weekend, I drove down to spend a day with them.
While the crowded indoor water park was not really “accessible”, I found a way to make it work, and Irena gave me both motivation and support to make it happen. We were not engaged yet, but a year and a half later, her children would become my step-children. Over the years, we’ve grown used to the odd stares and the uncomfortable questions. Sometimes these questions are inappropriate, but I would rather they be asked than allow misperceptions and poorly informed assumptions to exist. People have even asked Irena why she would choose to be with a person with my obviously complex challenges. (That’s putting it mildly).
Dating with a disability means taking risks to engage with the people that matter to you and allowing them to support you in your vulnerability. It means showing your scars, be they physical, emotional, or cognitive and allowing others, even the general public around you, to see the parts of you that you might rather hide. It means participating in the things you want to do but would otherwise tell yourself you can’t do or feel it’s not worth the effort to try because of your disability; but to grow a romantic relationship you have to be present in your beloved’s life even when things aren’t necessarily designed to be “accessible”. Romantic relationships are a vital part of the human experience and people with disabilities are human.
Disability Awareness is not just about understanding that people with disabilities need accessible parking spaces, curb cuts, audible crosswalk signals, wheelchair accessible bathroom stalls, ASL interpreters, sensory rooms, weighted blankets, etc. It’s about recognizing that people with disabilities are a vital part of our society, with a right to enjoy all aspects of life including love and intimacy, and in the year 2023 our society should be designed to include us. It’s about understanding that people with disabilities are also struggling with the same insecurities that you are, just magnified by additional obstacles, restrictions, frustration, and pain. Disability Awareness is about actively creating truly accessible communities that are safe spaces for a diverse people to share their scars and vulnerabilities without fear or obstacle to inclusion in all aspects of life, with equity in their independent choice and activities, which promotes a true sense of belonging in our day to day lives…which ultimately promotes positive emotional and physical health. Disability Awareness is also about working to develop a society in which people with disabilities do not feel like they have to expose their scars and risk additional injury and insult to participate in daily life with their loved ones, by continually improving our communal accessibility and understanding. Ultimately, it’s about seeing people with disabilities not as individuals with unfortunate and inconvenient medical issues to fix or accommodate, but as a people with a shared cultural history that creates the largest continually growing minority in the world and the only minority that crosses all other demographics.
Disability Awareness Month is about recognizing that Disability Inclusion and advocacy for Disability Rights must be an ongoing daily global effort, regardless of what month it is. As we move out of Disability Awareness Month, if you would like to learn more and develop an ongoing Accessible DEIB program for your organization or associations, or if you know of a business or organization who needs this focus, feel free to reach out to me at [email protected].
Photo Description: A smiling bearded man in his 30’s with brownish-red hair and bi-lateral above knee amputations (both legs missing from above the knees and down), shirtless and wearing red swim shorts, floats on his back in a lazy river. He is supported by a beautiful brunette woman who floats behind him. She is smiling as he rests his head on her right shoulder with his face turned to his left toward her. There are several noodle floats in pink, green, blue, and purple colors floating around the happy couple. A young boy with short spikey blonde hair floats nearby watching them as the current carries him further down the river towards other people moving along ahead of him. The lazy river and surrounding indoor water park is crowded with other people all around in the water and on the concrete pool deck engaged in their own activities. A wrought iron fence separates the lazy river from a water basketball court with overhead buckets of water and flowing sprinklers.
February’s meeting began late, as a result of technical difficulties. For some reason it took 20 minutes to get zoom to recognize that I was clicking on the “sign in” button! As a result, we started 15 minutes late with an important question about the stability of paid parental Caregiving as a permanent feature of Attendant Care services through the Aged & Disabled Medicaid Waiver. Please watch the video to learn about some important resources and issues confronting people with disabilities and conditions of aging in central Indiana and beyond!
Here are links for some of the upcoming events mentioned during the meeting:
EasterSeals Crossroads & DirectEmployers Indianapolis Disability Talent Showcase to connect employers & providers to job seekers with disabilities, held on the 3rd Thursday of each month from 1pm-2pm at Easterseals Crossroads at 4740 Kingsway Drive in Indianapolis, hybrid in-person and via Zoom at: https://iu.zoom.us/j/85031489757
The next virtual meeting of the Disabilities & Conditions of Aging Network for central Indiana and beyond, hosted by Advocates Personal Care will be held on Thursday, March 23rd at 10am. It is an open network for providers and individuals connected to and working in the community of people with disabilities and/or conditions of aging in central Indiana and beyond. If you would like specific time on the March agenda to share about your organization’s efforts, celebrations, or needs, please email Jeremy Warriner at [email protected] before March 21st. The link for the March meeting is below:
On Thursday, January 26th, 2023, the virtual Disabilities & Conditions of Aging Network, which is comprised of organizations and individuals who are part of the disability community in Indiana and hosted by Advocates Personal Care, gathered for our first meeting of the year. Rather than focus on a few spotlight organizations for the month, we had an open agenda with introductions and updates. In an effort to be more inclusive, we utilized closed captioning with this meeting. Please note that the captioning is Zoom’s “auto-captioning” which, while useful, is not always accurate. You can watch the session in the video below:
While we try to get to every attendee, this month a few people had to leave before the end of the hour. My apologies to anyone who did not get an opportunity to introduce themselves, their organization, or share any new initiatives for 2023. If you are interested in joining us in February, please use the link below. While we do try to give everyone an opportunity to share, please reach out to Jeremy Warriner at [email protected] in advance for specific time on the agenda. Hope to see you at the February session; all are welcome! (Please use the link below and feel free to share it with all who may benefit!)
Honored to have my story, and the path that led to Walking Spirit featured on the Give Back Economy Podcast based out of Toronto Canada! (click the link below to listen):
The December meeting of the Disabilities & Conditions of Aging Network, held on Monday, December 19th, featured highlights from the Alzheimer’s Association, Advocates Personal Care, and KidsFirst Adoption. This session also demonstrates an error in accessibility, which has a negative impact on inclusion, due to my own technical inability to activate the captioning. A technical challenge that I will address before the January meeting. January’s meeting is currently scheduled for Thursday, January 26th, 2023. Enjoy December’s meeting in the video below:
Join us in January, and feel free to invite anyone who can benefit from connecting with organizations and people who work within the community of People with Disabilities and/or Conditions of Aging in central Indiana and beyond! While we do attempt to give everyone a chance to introduce themselves and their organizations, please email [email protected] for specific time on the agenda. Have a happy holiday season, and a safe and happy New Year! Hope to see you in January on Zoom at:
On the International Day for Persons with Disabilities, December 3rd, 2022, I had the honor and pleasure of “representing” the United States in an international panel discussion about Ableism in the Media! The panel discussion, hosted by the World Disability Advocacy Leadership Group, is part of an ongoing series of webinars intended to raise awareness and provide guidance regarding advocacy for the human rights of all People with Disabilities, a global culture that incorporates the largest minority in the world. Watch the panel discussion here, and please leave comments. Enjoy!
I will check for comments regularly and try to respond within a week. Thanks for watching and be well!
The November session of the Disabilities & Conditions of Aging Network, hosted by Advocates Personal Care. Our goal is to create a regular opportunity for individuals and organizations that work within the community of People with Disabilities and Conditions of Aging throughout central Indiana and beyond to connect, coordinate, and celebrate in an effort to better support the communities we serve.
Our monthly agenda has been relatively relaxed, with a spotlight on a different organization each month, followed by a speed round of introductions & announcements. I took the spotlight for our 6th session; sharing a bit of my origin story as a person with a disability, in an effort to let the members of the network know more about the person who has been their facilitator from the start…yours truly. With the 17th anniversary of my Survival Day having just passed, and Thanksgiving a few weeks away, it was a pleasure and an honor to give thanks for my life, how my acquired disability set me on the path to create this network, and all of the people who have supported it!
The December meeting of the Disabilities & Conditions of Aging Network is scheduled for 10am on Monday, December 19th, 2022 (zoom link below). Due to the holidays, this is a variation from our regular 4th Thursday of the month schedule. Though we do attempt to give everyone an opportunity to introduce themselves and their organization, please reach out to me at my Advocates Personal Care – Outreach Consultant email, [email protected], in advance if you would like specific time on the agenda to share your organization’s efforts, announcements, or community concerns. Hope to see you in December!
The 17th anniversary of the day that forever altered the course of my life occurred this past weekend, on Saturday, October 22nd… Time has wrapped around again to the Survival Day being on the same day of the week. It was a Saturday when the accident happened, after a long stretch of workdays, looking forward to a Halloween party and a few days of rest. Little did I know that I was about to take a six-week nap…by this date, October 26th, in 2005, I was already asleep, experiencing another world that would fill my mind with memories from that time that did not happen…at least not on this plane of existence. This caused a great deal of confusion as I regained both consciousness and cognitive acuity.
To the best of my knowledge, I’ve never allowed so many days to pass between a Survival Day and an anniversary blog update. This has been a challenge for me this year, due to many things, none of which really have much, or anything to do with the loss of my legs. Typically, I prefer to spend the anniversary in seclusion for as much of the day as possible. This gives me time to reflect, to acknowledge how time has marched forward from that day that became a new measurement of time for myself and those closest to me.
For those who don’t know, during my commute home that night, a sixteen-year-old driver made a mistake behind the wheel of another car. I had the right of way and swerved to avoid the collision, but the other driver sped faster into the intersection instead of hitting their brakes. After a heroic, divinely inspired rescue effort by normal people who didn’t witness the accident but were traveling the same dark county road and risked their lives to free me from the twisted burning wreckage of my Jeep Wrangler, I was Life-lined to Methodist Hospital in Indianapolis, where I was placed into a medically induced coma. About 6 weeks later, I awoke to find that, among other injuries, both legs had been amputated from above the knee due to severe burns sustained in the accident.
It was a tragic event, more than a lifetime’s worth of physical, emotional, and mental trauma sustained in what seemed like an instant. It was also a miraculous event, in that I survived. That miracle took place over the course of weeks and was brought about through the hands of my rescuers, my first responders, my ambulance & LifeLine crews, my medical teams at both Methodist Hospital and the Richard M. Fairbanks Burn Unit at what was then Wishard Hospital (now at Eskenazi Hospital), and my tissue donors. I recognize that I had a role to play in that as well, as did all of the people who focused their love, energy, prayers, spiritual strength, and hope on my survival.
As I said, I prefer to spend my Survival Day in seclusion; this year that was not possible. Sadly, on this anniversary, my family was gathered to celebrate the life of my cousin Susy’s husband John. He was the best of men with the kindest of souls. Cancer, a thing I fear even more than sixteen-year-old drivers, took him from us…less than a year after claiming their son Chris. With all I have experienced, I have no idea how to console John’s family with this loss. I know that both John and Chris live on in their own spiritual journeys and are part of the divine energy that permeates this universe, thus closer to us than they ever could be in their physical forms, but that does nothing to make up for their tangible absence in this physical realm. Their absence is felt, they are loved, and they are truly missed.
John and my cousin Chris were among those who focused on my survival seventeen years ago. They were among those who gave me spiritual strength when my body clung to life…I was told there was a point when my heart was the only organ in my body that was functioning without assistance. Over the past 17 years, I have contemplated what I experienced while my body was in that state, and I know that for a time I walked on the other side of the veil. I’ve been where they are now, and a part of me will be happy to return there when the time comes.
I am lucky to be alive and am grateful for that every day, though some days it is easier to be aware of that than others. I am lucky to experience each new day and as each year has passed, I find myself amazed at what has transpired. I think back on the progression from barely being able to sit up in bed, to being discharged from the hospital to mom & dad’s house at a point where their relatively new next-door neighbor had to help carry me upstairs to bed each night, to living in my own home again… John and Chris helped modify my home by personally installing a wood laminate floor so my wheelchair could move through the house unencumbered by carpet; John also helped build a deck and pergola in my back yard so that I could access and enjoy my outdoor space… to learning how to walk on three different sets of prosthetic legs, to becoming a husband and step-father, to the point in time that the seventeenth Survival Day has passed. The challenges that I have taken on this year, I would never have contemplated attempting even a year ago.
This has been a year of challenges. Not that every year isn’t full of challenges but, somehow, the time between the last Survival Day and this past Saturday has felt exceptionally full. Some challenges have been bad…two rounds of covid, just to name a few…and many have been good. I could take this in a dark direction but would rather focus on some of the positive challenges that I have faced with my family and friends at my side.
This past year I personally added a hardwood floor in our entryway, with the help of a friend…
I began practicing martial arts again, and modifying martial art forms, “Katas,” for both the wheelchair and prosthetics with crutches…
My father and I added a vinyl plank floor in our dining room…
The whole family flew west to Bellingham, WA for my uncle’s finale year as Artistic Director of the Bellingham Festival of music. While there, Irena and I went whale watching in a tandem open water kayak (has a rudder that Irena had to manage with her feet) and attempted to circumnavigate one of the San Juan Islands. (Currents were too strong for us to make good time so, our guide had us turn around).
The trip west finally presented the opportunity to introduce my beloved wife, Irena, to my aunt Jean. Aunt Jean lives on a remote and relatively inaccessible island in the San Jaun’s. My sister Sarah and niece Madeline made the journey with us. Her home is one of the most beautiful places that I’ve ever seen. To get there, you have to take a water taxi, then ride in her SUV as she drives up a steep gravel road to the highest point on the island, where she has a view of the Cascades, the Olympics, and Mt. Rainier (on a clear day).
The next day we drove to the top of Mt. Baker, which is the tallest mountain in the Cascades. I walked out to some places that I should not have. The view was worth it.
We returned home and I continued with a summer long project of turning over and rearranging all of the paver stones in our back yard to both create a new patio & firepit area, and to put landscaping fabric underneath the pavers. (I’m getting too old to weed whack from a wheelchair multiple times a year). After completing the paver/patio/firepit project, I designed a pergola to go over the deck of our “new” house. (We moved here five years ago, from the house that John and Chris helped modify…I’m now doing the things that they helped me accomplish all those years ago).
Friends and family helped me build the pergola, and I spent the day after my Survival Day adding the finishing touches. Tonight, I’ve enjoyed taking the time to contemplate my continuing journey, sitting underneath the lattice in a space that would not exist, had I not survived 17 years ago…and every day since, grateful for the challenges that have brought me through this Survival Day and into my new year.
