By Renée Soniat
A “perfect storm” of technological chaos made me fully present recently. I wouldn’t have chosen to go screen-free, but in retrospect it was wonderful.
My phone died. Fried-and-not-coming-back-with-a-charge, dead. I was out of town for a conference and had no time to replace it. On top of that, my laptop was drained. And the clock in the hotel room was blinking “12:00.” It was dark and I wasn’t sure if it was morning yet. I pulled back the drapes to see the streets of Washington, DC buzzing with activity below. So, I got ready for the day. I did not want to miss a single thing from this national conference I had the good fortune to attend.
I was staying at the same hotel as the conference. When I got downstairs, I could finally see the time. I was about 20 minutes before breakfast, which was to occur right before the conference. I peeked into the enormous ballroom and noticed the vast emptiness of hundreds of chairs waiting to be filled. I grabbed a cup of coffee and found a big, comfy chair. My colleague, Jen, commuting from Northern Virginia, would be texting me soon to meet for the morning plenary. With no way to receive that text, I decided to have breakfast by the escalators so I could catch Jen and other colleagues on their way in.
Without a screen to bury my face in, I was reminded how much I enjoy people watching. Then I noticed, what I would not have noticed, if I wasn’t forced to be fully present in this moment: the man in the peach colored shirt.
As he came down the escalator, his shirt was the first thing I noticed. He looked confident and professional, with a well-coordinated tie, dress slacks and sharp shoes. His conference name tag displaying “Mitchell” was in place – he was prepared for his day. I had noticed this man several times before over the last couple of days. Each time I saw Mitchell, he appeared to be by himself, fully engaged in the sessions. Not unusual at a conference, right? He was arriving alone this morning too, clearly solo riding down the escalator. Why is any of this noteworthy, you may wonder? Seems like a typical guy for the situation at hand, except for maybe the stand-out color of his shirt.
For me, Mitchell seemed anything but typical. The physical features of his face told me there was more to his story; or, my assumptions about his story. Mitchell has Down syndrome.
I flashed back to 20 years ago, near the beginning of my career in residential care (which has evolved into so much more). I thought of people, like Bobby, who never had a chance to know his family, nor they him. Bobby lived most of his life in an institution, born in a time when parents of children with disabilities were often assured that their child would be far better off in this sort of setting. He was “allowed” to transition into the community later in life. But he was never truly a part of the community. Like Mitchell, Bobby also had Down syndrome. His speech never developed, but he understood everything. He followed the relentless directions from staff. Time to get up. Time to get dressed. Time to eat. Although the staff cared deeply for him, Bobby didn’t have much of a say. Not even simple things like the clothes he wore or even what he ate for breakfast. Sometimes I wonder if he even liked his nickname. Maybe he would have preferred to be called, “Robert”. The staff provided choice as much as possible, but there were many challenges in allowing that, including those embedded in the very system that was there to support him. Bobby, a creature of habit, like we all are, lived his days in the group home and day support center being directed, just as he was before coming out of the institution. In some ways, Bobby trained us to provide that structure for him. That was all he knew; maybe that was a comfort to him.
I got a visual of how this current scene might have played out 20 years ago, if that were Bobby coming down the escalator. First off, he was terrified of escalators. He would have most definitely asserted his choice! He would have physically pulled away from the escalator with a shocking amount of strength. The stairs would have been too dangerous, due to his posture. He had spent many years hunched over and as a result, walked completely bent over at the waist, as though he were getting ready to sit down at any moment. So, he would have taken the elevator. Bobby certainly would not have been by himself. He would have had a support person with him, along with a few housemates and another support staff person to assist with the group. Bobby and his housemates would have been dressed in similar, easy-on-easy-off clothing, complete with velcro shoes, back before velcro shoes were cool again.
It is very possible that Bobby wouldn’t have had the opportunity to attend this conference to begin with, much less, be given a prominent voice at the head of the table. But the Association of University Centers on Disability (AUCD) is an organization comprised of people with disabilities and disability advocates. They hold the primary roles at this conference.
My observations of Mitchell and how this might have looked for Bobby, is in no way a comparison of the two men. They are different people. Different experiences, likes, dislikes, hopes, dreams, skills, gifts and on and on. But I can’t help to think about how the difference in the attitudes of those in power of designing support systems, then and now, have shaped, and are shaping, opportunities for people with disabilities. I wonder about Mitchell. I wonder if anyone was back in his hotel room to support him. Did someone help him stay on task and put that handsome outfit together? Did anyone review with him the schedule for the day? Did he already pick and choose which sessions he would attend or would he “wing it”? Does any of this even matter? Of course, none of those details are any of my business, but I am curious about what factors led up to his amazing level of independence.
As I sat there waiting for Jen, I noticed Liz Weintraub coming down the escalator. Liz, a powerful advocate in the disability community, noticed that I smiled at her and probably noticed that I was sitting alone. She approached me to say good morning and asked which state I came from. I explained where I was from and which university center I was representing, and it turns out we know a few of the same people. Liz asked if I would be attending the visits on Capitol Hill the next day and urged me to attend and reach out to my representatives. She was warm and genuine and ready to assist if I needed help with this process. I was grateful. And a little star-struck too. This was an encounter that never would have taken place, if I had access to my laptop or phone. I would’ve killed time, mindlessly scrolling through Facebook, or texting reminders to my husband back home, while waiting for Jen’s text.
That night, an awards dinner took place and a coworker, Jack Brandt, was honored with the “Young Professional Award.” Jack is a disability policy specialist, tireless advocate, and artist. His Richmond contingency was, of course, delighted to hoot and holler from the back as he accepted his award. During his speech, Jack mentioned several people who have been instrumental in his journey, one of whom was Justin Dart. Back at the office, one of our conference rooms is named for Mr. Dart, along with one for Helen Keller, one for Temple Grandin, and one for Ed Roberts. Justin Dart played a key role in passing the Americans with Disabilities Act (ADA) and his story is incredible. Reflecting on the work of Roberts, Keller, Dart, Grandin, Weintraub, Brandt and so many others who had, and have, countless and seemingly insurmountable obstacles that they just absolutely crushed, I am overwhelmed by their strength, fortitude, and perseverance.
The next morning, the final conference day, I went to Capitol Hill which, in all honesty, I would have probably skipped if it weren’t for Liz. A handful of politicians from both parties spoke on their disability work. Some of what I heard seemed like a boring commercial. Some of it was surprisingly inspiring. Some of it gave me chills. To hear the historic details of advocacy from this vantage point was exhilarating, and it had been a long time since I’d felt that rejuvenated in terms of my career. I am grateful for the politicians who advocate and use their power for the good of all people. But it is not lost on me, that the sheer grit and determination of the Roberts, the Kellers, the Darts, the Grandins, the Brandts and the Weintraubs “out there”, has made the biggest impact and influence on shaping inclusive communities. Maybe one day, another well-dressed man with Down syndrome will ride down an escalator somewhere (perhaps solo, perhaps not) and it won’t be noteworthy; except for maybe the color of his awesome shirt.
*Since writing this story, Renee has discovered that Mitchell is a powerful advocate making history as well. Mitchell Levitz has served on boards and councils nationally and in New York and Ohio. He has traveled across the United States speaking about what it is like being a person with a disability. And he has co-authored the book “Count Us In: Growing up with Down Syndrome.” Mitchell lives on his own in upstate New York.
***Renée Soniat has more than 20 years of experience serving people of all ages with developmental disabilities in various capacities. She is the Central Virginia Regional Network Coordinator for the Family to Family Network within the Partnership for People with Disabilities at Virginia Commonwealth University. Renée has a special interest in inclusive practices in faith communities and is a child advocate for body safety awareness, healthy relationships and abuse prevention. Renée’s greatest joy is her family. She lives in Richmond, Virginia with her husband and their three amazing sons.***