Editor's Column - January 2015

Tim BenjaminAt the New Year, it’s good to look backwards and forwards. Access Press had a successful 2014, publishing 12 issues that were jam-packed with good information on upcoming events, people and places around the country, as well as progress reports on local public policy developments and a few success stories.

We are fortunate to have a talented and loyal staff and a strong and enthusiastic board of directors. Now for 2015 we are looking for a few new board members, so if you are interested please contact the office for information on how to apply. Finally, we were successful in our pursuit of a grant from the Bremer Foundation that will make our work much easier in 2015.

Unfortunately for me, at the end of the year I got quite sick and was out of the game for a couple weeks. But I wasn’t the only one; a lot of people with disabilities have been slammed by the flu and cold viruses that are going around. Every fall we are warned about the upcoming flu and cold season. Most of us take heed of the warnings and do our due diligence to protect ourselves from traumatic weather changes and the nasty viruses. We all know how hard it is on those of us with other forms of compromised health or immunity.

As the hospitals are besieged by the general population’s flu, colds and lung crud, it becomes terribly hard when any of us with an existing disability or “pre-existing diagnosis” get sick. It seems as though the medical world wants to diagnose and treat our illnesses with long stays in the hospital—while they try and separate our idiosyncrasies from the symptoms. Unfortunately, during those hospital stays, there’s little support for our existing disabilities and less support for the kinds of things other patients do for themselves suck as shaving, showering and other normal tasks of daily living.

One of the very odd things that’s ever happened to me occurred during this stay at the hospital. A young intern came into my room and asked me if I was sneaking sips of water and not telling anyone—when I knew they were trying diligently to track my fluid intake. Of course I asked if she was accusing me of somehow deceiving or lying to the nursing staff. She began backpedaling quickly. “I’m not calling you a liar; I’m just wondering if you’re sneaking sips.” I asked her, “How is that not calling me a liar?” and she apologized for the “misunderstanding.” One of the things that annoyed me was that it probably never even crossed her mind how a quadriplegic would somehow sneak a sip of water from a glass that was out of reach, or for that matter, pick up and use a glass that was within reach. There were others examples, but that was one remarkable demonstration of the lack of knowledge of disabilities within the general medical community.

Those of us lucky enough to have PCA support know that our PCAs cannot get paid while we’re in the hospital, even though they would be the workers most able in that environment to help us. So as a result, we too often are made to feel that we are overtaxing the hospital staff. More importantly, the lack of personal care support can create bigger problems through lack of continuity of care for our existing disabilities.

While I am truly grateful for the efforts of the many nursing assistants, nurses and doctors who may literally have saved my life over the holidays, I also wonder how many able-bodied patients had to spend as long as eight days hospitalized with a pneumonia diagnosis. One doctor said, “We’d like to get you home as soon as possible. The hospital’s a place where you’re at risk of more problems.” I agree: let’s figure out how to get better acute care specifically for people with disabilities, and then just let us go home with enough added home care to help us get ongoing lab tests and coordinate care with hospital experts. It just seems that the technology we have today could easily be monitored by the hospital while we are at home getting healthy with care from our existing home care professionals.

Well, this New Year is starting out very cold, and I wish us all good health and a return to sunshine.