Keeping The Vision Alive
If you look closely at the agenda for tonight's City Council meeting, you'll notice a ceremonial item recognizing that February is Retinitis Pigmentosa Awareness Month.
Retinitis Pigmentosa is an umbrella term for a group of genetic eye conditions that cause the gradual deterioriation of the retina in some people -- impairing the vision of all who have RP and causing complete blindness in some. Representatives of the Foundation Fighting Blindness will be present at tonight's meeting.
There are lots of good causes out there to highlight, and many of us up on the dais do our best to call attention to them and encourage people to help out. So why, tonight, have I placed Retinitis Pigmentosa Awareness Month on the agenda?
Because a few months ago I was diagnosed with having Retinitis Pigmentosa.
Those of you who know me well have surely noticed a deterioration in my vision in recent years. I don't always see you because I have blind spots. (Most embarrassingly, I now have a blind spot right where people stick out their hand for me to shake it!) I often bump into people or trip over things that you can see but I can't. In the council chambers, I frequently look at the TV monitor to watch our public commenters, rather than look straight at them, because I can see them better on TV. (The lighting in the City Council chambers is pretty bad -- and in the Community Meeting Room it's even worse!)
RP runs in my family, so I always knew I was at risk for it. But I didn't really notice symptoms of it until I was in my 40s -- about 12 or 13 years ago. At that time I was tested at the Jules Stein Eye Institute at UCLA, where the experts acknowledged that I had the symptoms but did not diagnose the condition. About a year ago, I began to notice significant deterioriation, especially in my right eye. So last fall I went back, and this time I was diagnosed.
You can take a few steps to arrest the progress of RP (this is why I usually wear the outsized "solar shield" sunglasses). But it is impossible to predict how rapidly the condition will progress or how much sight I will eventually lose. I can only hope that because I was diagnosed fairly late in life (in contrast to many men in my family), I will retain at least some vision for the rest of my life.
Even though the diagnosis was no surprise, I have to admit that it is taking me a while to get my head around what all this means. The mental and emotional adjustment is huge. It is not easy to wake up on the morning and say to yourself, "I am a person with a disability" -- much less understand the consequences. Yesterday I was on the treadmill at the gym (and, of course, the recent Ray Charles biopic was on the TV) and it dawned on me that sooner or later -- maybe even now -- I will have to stop running on the promenade because I won't be able see all the things I need to see. Meaning, I will have to surrender one of the greatest pleasures of my life.
I have already changed my lifestyle some -- for example, I live along Main Street in Midtown and work Downtown partly because it is a very easy bus commute, and I am trying to cut down on driving generally. But it is clear I will have to adapt a great deal more in the future. A couple of weeks ago I had lunch with my friend Michael Levine, a local disability rights activist who suffers from retinoschisis, a different retinal degeneration condition. Mike's persistence in advocating for disability rights can sometimes make life difficult for us in public life (as our City Manager Rick Cole noted in his blog a while ago in writing about the Americans for Disabilities Act and our efforts to implement it here in Ventura). But I appreciate his vigilance (some of my visually impaired relatives are also disability rights activists, like Mike) and his caring and concern for me has been very meaningful to me.
Mike and I met for lunch at Danny's, and we talked a lot about things, like giving up driving and using a white cane -- things I will probably have to confront sooner or later. Then we went for a walk around the neighborhood and over to the Ventura Transit Center. The thing that really strikes you when you are losing your vision is how important the small things are -- sounds that signal something ahead, textures on the ground that serve as warning signs. It's funny -- I've spent a lifetime as an urban planner, devoting my life to creating what we call "the built environment," and there are so many things about the built environment that I never noticed before or I am just beginning to learn about.
I can't tell you whether I'll become an aggressive and vigilant disability rights activist, like Mike or my relatives. I can tell you that I am already more aware, every minute of every day, of how difficult it is to navigate the world if you are a person with a disability; and that awareness will inevitably creep into my thinking as an urban planner and as one of your elected representatives.
One thing that has really struck me in recent weeks is that we are all physically fragile, and as we live longer, most of us face the prospect of some sort of disability -- impaired vision, impaired hearing, impaired mobility. In other words, I can view myself as a person with a disability and you as a person without a disability, or I can view myself as a person with a disability now and you as a person without a disability yet. It seems to me that if I view the world that way, then I can actually be a better City Councilmember -- not necessarily advocating for the rights of those with disabilities in a world sometimes hostile to that cause, but as kind of an advance scout for my constituents, trying to understand what they will need in the future and how to plan for it. Which, come to think of it, is why I went into the field of urban planning in the first place.
