Measure
in gratitude and respect
As my regular readers of Rocky Point know, my wife and I spent the last two weeks with our daughter Jessica (see post Piggy Market) on a road trip to Florida. We’re grateful for the chance to spend some extended time with her, and we’re also grateful that she is back in her home in Scarsdale, NY, well cared for by the excellent staff at The Arc Westchester.
Being with Jessica is a delight, but it also requires attention to her various needs which include responding to questions she repeatedly asks, such as “work tomorrow?” which means her “day program” or “how many beds to “new” (Scarsdale) house?” We pause to take a breath and give her the same answer we did previously, and try to realize that her sense of days, place, and time aren’t the same as ours. She requires help with her personal care needs, and I question the actual accessibility of “accessible” hotel rooms as I try and help navigate her adult bulk into and out of a bathtub, with my arthritic knees creaking away. We are so thankful for those “family restrooms” at highway rest stops as we don’t have to navigate the congestion of the common restroom. As we lead her into these rest stops or restaurants, we are close to her side and always conscious of the nefarious “Mr. Gravity” and how he can make her lose control of her walker in the blink of an eye. She loves to eat, but we must help her choose menu items by describing them since her literacy skills are limited. My wife ensures Jessica takes her prescribed medicines, including an anti-seizure drug.
By the time we got back from our Florida trip, we were exhausted, not only from the drive but also from the constant attention that Jessica needed to help her successfully navigate this world, a place built mainly for the majority and not the minorities. Jessica makes it all worthwhile with her love and wonder at life, which is truly amazing. However, caring for her needs can be a physically and mentally draining experience.
I’m describing all of this not to solicit your sympathy but to ask you to join me in acknowledging the dedicated direct-care workers who serve people with all types of developmental disabilities in group residences, supported apartments, and day programs. Their job isn’t easy (as I can personally attest), and they do all this without receiving wide recognition or adequate compensation ($15.17 per hour median salary in New York State*). While it is heartbreaking not to have Jessica with us each day, we know, as we age that we can no longer support her daily needs for extended periods. Without the fine people at The Arc Westchester, her future, and our peace of mind, would be in question.
Our daily news feeds are full of stories about millionaires in the entertainment and sports industries. Something is askew. Mahatma Gandhi said, “the true measure of any society can be found in how it treats its most vulnerable members.” By that standard, our society is failing the dedicated people who support Jessica and people like her. While you might not be directly impacted by this fact today, many of us will need extra care due to age or acquired disabilities in the future. Someday, somehow, all of us will become “vulnerable.” How will we measure our society when it directly impacts us?
*NYS Median Salary Direct-Care Worker
Jessica is lucky to have you and your wife as such loving parents. I know how exhausting it must be, even for a short while. You're right that we do such a disservice to our care workers by not paying them even a living wage or acknowledging what their efforts do for the least of us.
I wish it were not so. This has been an ongoing problem since the days of public and private institutions.
If only we could get over thinking our military-industrial complex should have such high priority, or that the wealthiest shouldn't have to pay their fair share, we might then have the resources to take better care of everyone in this country, including and especially those who need institutional care.
Thank you for doing what you do. Speaking out is so very important.
Heartfelt and real, Jordan. Our responsibility to those who need is often overlooked, and we all will be there at some point in our lives. Let’s hope there is someone there to care for us like the direct care professionals care for Jess on a daily basis, and they continue to do so out of love and not for the meager salary they receive.