Only Anecdotal

Hello. I am Julie James, and I like to talk. More than that, I like to listen, and I hear a lot of stories.

For six years, I was the Options Counselor at the Metrowest Center for Independent Living in Framingham, Massachusetts. When I started, Options Counseling was an Aging and Disability Consortium test program with three sites. Our mission was to keep people at risk of institutional placement from actually ending up in one. The biggest risk of institutional placement was–is–the post-hospital rehabilitation time in a nursing home. Many people ended up too disabled to return home, or this was the common assumption. It was exciting to challenge this assumption, and I did it every single day of those six years.

Over time, we realized a few things. One was that overcoming financial structures and bureaucracy–not to mention sheer tradition–was going to be a huge challenge. There has been some progress, through the Affordable Care Act and more emphasis on patient-centered care. But there have been restrictions also in funding. Too often the push against institutions comes in the restriction of benefits in the institution without replacing that funding in the community.

The other challenge was simply exposure. We could help people tap into resources, but telling people that we were there was not as obvious as it seemed. Outreach quickly became the biggest part of the job. For me, it  was also the fun part. There are amazing professionals in hospitals, doctor’s offices, town offices, etc. I love making connections that create a community.

In my work, I saw many overlaps in the difficulties people face in their lives, particularly when it came to their interactions with the healthcare system and the human services system.  Without a way to accurately collect data, I created Only Anecdotal to tell some stories about the human side of healthcare policies–especially long-term care policies.

I imagine that any story may sound familiar to anyone who has been in a similar situation.

Likewise, you may have been on the other side of similar interaction, as a professional. And in this case, I admire your compassion and commitment, and the balancing act you maintain day after day.

In 2014, I changed jobs, and worked for a couple of years as the Consular Officer at the Consulate General of Canada in Boston. Moving into the diplomatic world brought my past life in languages back around, but I remained engaged in what my supervisor first described to me as “social services for Canadians in the United States”. We saw similar situations, more of them, actually. It is always a question of boundaries, and how to cross them.

I worked after this in a consulting firm targeting European companies moving into markets in the United States. The company was growing, and I was hired to assist the managing partner. The company was truly international, straddling two predominant cultures in the office: the U.S. and France. Many employees were from other places, but owner, founder, and most clients were French. I expanded my skillset there, learning Salesforce, honing recruiting techniques with leadership in the infancy of a talent search department, writing proposals for potential clients, as well as business plans, coordinating visa applications, planning big parties. COVID eliminated my role, and the company has since been acquired, so I moved on.

I returned to teaching for some time, and eventually worked for a couple of years in a law firm specializing in guardianship and estate planning. We also administered supplemental needs trust, and I worked with beneficiaries beyond the work I did in the law firm. My biggest challenge in the role there was moving from the scarcity mindset I had developed in my years in the Independent Living movement. Our clients were able to afford a lawyer, first off, which meant that they were also usually able to afford services. This would seem a good thing, but I was so often astounded by the gaps, as well as by the assumptions of clients–not unreasonable ones, mind you–that securing home care services (for example) should not be harder than buying a car. It turns out that money does not buy everything in a society that more or less denies the existence of chronic illness and disability. Education is not a given, nor is care.

This blog has had few updates at times, largely because telling stories completely may compromise confidentiality. I think I have enough perspective now to weave what I have learned over the years into narratives that do not betray my ethical responsibility. I hope so, because the stories need to be told.