Several weeks ago, my fellow advocates and I spent time reflecting on a question posed in a team meeting: What would you want other people – EAIME supporters, legislators, community partners, and so on – to know about your work?
The ensuing discussion was fascinating. Even as we are each engaged daily with older adults who have experienced abuse or neglect, having the time to step back, consider, and share our thoughts was both empowering and enlightening. To a person, we realized that we have essential voices as activists, voices that we must exercise on behalf of the people with whom we engage.
And so my colleagues have taken time, once again, to reflect on what they want the world to know about our work and, as importantly, the people with whom we work. I’m grateful that they’ve allowed me to share their voices with you here.
“You’re in the driver’s seat…”
With regard to our work, advocates emphasized the importance of keeping the client at the center of everything we do. One advocate begins relationships with clients with a metaphor: “We’re going on a journey together. You’re in the driver’s seat, and my job as an advocate is to work with you to build connections and sustainable support necessary to reach your desired destination.” We engage with our clients with an understanding that they are the experts in their lives, that they have spent a lifetime identifying what they value and acting on what is important to them, that they should – and can – continue to determine the course of their journey. One advocate describes this so eloquently: “Our clients are human beings with a past, present, and future…and should be seen and heard as such. Just as we all desire, our clients deserve the right to make choices that are respected and upheld.”
That sounds like common sense, but can be pretty uncommon in practice. And to be fair, we all have moments when we have concern about a client’s choices, when we have to work hard to restrain ourselves from grabbing hold of the steering wheel, so to speak. But, as advocates, we all come back to that client-centered touchstone, to the essential right of all people to exercise their autonomy. Advocates noted that this commitment to our client’s self-determination can cause friction with other concerned parties, making it critical to clearly explain both our role and program’s philosophical approach at the outset.
“Trust is a privilege that we earn…”
We could not do our work without the time and patience necessary to build strong relationships with clients and concerned others – that’s one of the things that’s unique about the Elder Service Connections program. One advocate explains, “It’s a privilege to be included in the intimate details of our clients’ lives.” But it is a privilege that we earn, by coming to our engagements with humility and compassion, by building mutual trust and respect, by just reliably showing up for our clients. As we listen to our clients’ stories, it’s easy to understand why trust takes time to build. What we hear is often heartbreaking – stories of lifelong trauma and loss. One colleague notes, “In many cases, the issues being identified as abuse or neglect are the result of a breakdown in systems and relationships over many years, rather than an acute event.” No wonder that it can be challenging to foster a sense of safety and trust, given the history of being hurt, marginalized, disenfranchised, or otherwise let down by families, communities, and systems.
“Systems care more about systems than human beings…”
The systems with which older adults engage are “complex, fragmented, understaffed, confusing, and difficult to access” – even those that primarily serve and support older individuals, and even when an advocate with knowledge of those systems helps to navigate them. One advocate explains: “There are many unwritten rules and unknown terms that providers may expect clients to know and follow without ever taking the time to explain things in a way that makes sense to older adults, their family members, or concerned others.” As a result, clients are “shamed and blamed” with labels like “non-compliant” or “difficult”, simply because they don’t understand how to access help when it is needed.
But what if we reframe this, as one colleague suggests, and instead think about how our systems are “non-compliant” and “difficult” for older adults? Why do we expect people to conform to systems, rather than building systems to conform to people (of all ages!) and their needs?
As an example from the field, I recently helped a client reach out by telephone to a service provider that works largely with older adults. In seeking assistance, we were told that the agent needed to send a text message with a code to the cell phone number on file; on receipt, we needed to repeat it back to her. I won’t go into details, but it took nearly two hours to figure out how to comply with the “system” requirements. If I hadn’t been there providing support (and using every ounce of my ingenuity), my client would likely have gone without benefits that were desperately needed.
These kinds of experiences are commonplace and often leave clients without vital support from the systems that are specifically tasked with delivering service to them. Depending on the client, different modes of communication can be difficult – impairments in hearing or speaking may create barriers to telephone conversations; challenges with mobility may complicate the ability to regularly send or receive postal mail; a lack of access to or comfort with technology may make email, text, or completing online forms nearly impossible; and transportation gaps (and more recently, COVID) can impede the ability to visit providers in person. Even when a client is able to “get through” those barriers, they may end up within a system that is geared toward meeting the needs of a younger service population or working with a professional that doesn’t fully understand the specific circumstances faced by older adults.
All of these challenges contribute to internalized ageism, which we know makes it even more difficult for people to request the support they desire, and, ultimately, system burnout as people just give up and go without. As one colleague shared, “When I participate in community meetings, I’m often the only service provider who works in the aging field or understands the nuances of providing support to older adults. If I feel that sense of isolation among my professional peers, imagine how my clients must feel as they navigate the systems in which they are involved.”
“Strong people living in an often fragile world…”
Maggie Kuhn, founder of the Gray Panthers, described older age as “strength and survivorship”, and we see that every day in the resilience and resourcefulness of our clients.* As one of my colleagues commented, it is our job to “seek to understand the unique skills our clients have developed to survive and thrive throughout their lifetimes and incorporate knowledge of these strengths into our work.” Despite the varied challenges faced by the people with whom we work, as we engage, we often find an irrepressible sense of humor, lots of creativity, and tremendous pride born out of a lifetime of hard work and sacrifice.
We also bear witness to the fragility of our clients’ situations as they confront a very real fear related to aging – a loss of independence. Having spent their entire lives living independently – participating in the workforce, raising families, and making decisions, large and small, for themselves – circumstances suddenly threaten that independence. Intersecting physical, mental, and behavioral health issues, a lack of services, and financial strains all contribute to this loss, which profoundly impacts an individual’s sense of self. It’s humbling to realize that, as one client told me, this could happen to me one day, too. Truly, none of us is immune to situations beyond our control that challenge the viability or sustainability of independent living. Remembering this allows us to come to our work with humility and compassion.
Our work gives us the opportunity – and privilege – of getting to know our clients on a deeper level, of taking the time and care to understand and honor the life experiences that make them who they are today and define what they want for tomorrow. Every day, we see the incredible complexity and diversity of the human experience. People often have a set of ideas about what “elder abuse” looks like…I certainly did when I came into this role. But I was quickly disabused of many of them. Far from being frail or helpless, our clients are strong people living in an often fragile world, a world that too often forgets that the essence of being human is resistant to the passage of time.
* I personally prefer the term “resourcefulness” to “resilience”, as resilience implies that a person has a choice about whether or not to persist in something. For many minoritized and vulnerable individuals, “bouncing back from adversity” isn’t a matter of choice, it’s a matter of survival. The notion of “resilience” often results in an underestimation of need, as well. What I see in my clients is a resourcefulness – creativity and determination in the face of adversity – that is truly remarkable, and that’s what I want the world to know about.
