Filmmaker and advocate Joe Lovett is the producer/director of Going Blind: Coming out of the Dark about Vision Loss, a documentary film created to increase public awareness of blindness, vision loss, and the vision rehabilitation system. Going Blind is also Joe’s personal story of his ongoing struggle with glaucoma and his sometimes-difficult journey through the “secret world,” as he calls it, of vision rehabilitation.
Our VisionAware Interview with Joe
In our interview with Joe when Going Blind debuted, he had this to say about the damning phrase “There’s nothing more than can be done,” which – unfortunately – adults with vision loss continue to hear all too frequently from their eye care professionals:
It seems to me that the needs of so many people living on the spectrum of vision loss are not being met. Ophthalmologists are generally not sending people with vision loss to vision rehabilitation services, because they seem to see it as a professional failure.
You know, prior to producing Going Blind, the world of blindness and vision rehabilitation was a secret world to me – one I knew nothing about. Even after making the film, I don’t pretend to be an expert, but my understanding about this area is that information about it is woefully inadequate. The biggest concern I have is that not enough people are being referred for vision rehabilitation services.
And Now, the People Speak!
Going Blind has ignited constructive dialogue and meaningful discussion throughout the vision loss and medical communities. The following passages are excerpted (with permission) from the dozens of impassioned responses Joe receives after each of the now-hundreds of Going Blind screenings throughout the country:
- Another in a long string of unacceptable, frustrating – profoundly disturbing, really – interactions with an ophthalmologist has just re-confirmed the need for a real shift in the landscape of glaucoma treatment.
- My doctor is not interested in, and is not going to discuss, my glaucoma, a disease I am going to have for the rest of my life. If I can dig deep enough, I can find questions to ask and perhaps get answers to; but what about what I don’t know enough about to ask? Why is the burden on me, the patient?
- From discussions at a glaucoma support group I have become aware that few glaucoma patients have ever been shown their own visual fields, let alone received a serious explanation of the practical consequences.
- I have no doubt that both the doctors I have seen are technically top-notch and that they have done all the tests, imaging, and diagnostics necessary to manage my disease as best they can. Neither, however, has made me a part of the process of dealing with this disease.
- I know that the “system” often forces doctors to spend less than optimum time with each patient. But the response to these limitations should not be to leave the patient in limbo. A prestigious [eye care practice] could have resources available for the patient to learn more – a website, literature, support/education groups.
- Can a doctor be so focused on the components of a person’s eyes as to not even notice the person who uses these eyes to navigate this world and look into the eyes of their fellow humans? Can a doctor be so focused on a patient’s [eyes] as to forget that he or she has a heart?
Maureen’s Response
My long professional experience has taught me that many (but not all, of course) eye doctors are very willing to explain the medical aspects of an eye disease in great detail. However, when the patient inevitably asks “Is there a cure or surgery that can help me?”, the doctor – more often than not – will say “There’s nothing more that can be done.”
And so the discussion ends there. Patients will exhaust their resources searching for a cure, or are resigned to a life with vision loss. Neither option is a good one, is it? But it certainly should not end there.
Because I’ve worked with many ophthalmologists and optometrists throughout the years, I’ve developed a certain insight into the medical psyche that enables me to deconstruct and reinterpret the damning phrase “There’s nothing more that can be done.”
When an eye doctor says “There’s nothing more than can be done,” what he or she likely means is this: “There’s nothing more that I can do surgically.” That’s a very different statement with a very different meaning, isn’t it? Think about it: Doctors are trained to fix and to cure. That’s a good thing, of course, except when they can’t.
When a physician (not all physicians, certainly) is faced with an incurable eye disease, it’s my belief that he or she feels defeated, helpless, and ineffective because it is not “fixable” or “curable.” But instead of saying “There’s nothing more that I can do,” he or she says instead, “There’s nothing more than can be done.”
And of course that is not true. There is an immense and welcoming world of vision rehabilitation services that are available:
- A low vision examination, for example, is very different from a regular eye examination.
- Low vision optical devices can help with many everyday activities, such as reading, writing, and watching television. Low vision non-optical devices can also help with everyday activities.
- Certified Orientation and Mobility Specialists teach the skills and concepts that people with vision loss need in order to travel independently and safely in the home and in the community.
- Certified Vision Rehabilitation Therapists teach adaptive independent living skills that enable adults with vision loss to perform, with confidence, a wide range of daily activities.
- There are also many veteran-specific organizations that offer vision rehabilitation services to blinded veterans of all ages.
There’s nothing more that can be done, you say? We beg to differ.