Consigned to Mediocrity? Part 2

By Tony Swartz

Again, I believe that it is necessary to preface my observations and comments regarding the state of services for the blind in Pennsylvania provided by private agencies with this disclaimer: my observations and comments are solely mine and do not necessarily represent the opinions of the leadership and peer network of the Pennsylvania Council of the Blind.

In part one, I explained how member agencies of the Pennsylvania Association for the Blind (PAB), the predominant private providers of services to those with vision loss in Pennsylvania, are reliant on the charity model for the bulk of their funding. I further explained that this form of funding is prone to significant fluctuation, and by the nature of its haphazardness and unreliability it per force dominates the efforts of agency boards, significantly influencing agency program planning. Furthermore, the constant chase for dollars leads agencies to take what they suppose as the path of least resistance in their funding appeal messaging.

The Message of the Appeal
The traditional charitable appeal is emotive, but, of course, all appeals, be they for a charity or the sale of a product or service, are, for the most part, based on emotion. It is the after-message, the impression they leave, that is the issue for us as consumers of these agencies. It is unfortunate that those involved in creating the appeals for these agencies have little feel for, or perhaps don’t care to distinguish between the sympathetic from the empathetic message. In gross terms, the sympathetic message objectifies us as, “the poor unfortunates for whom our agency will care”; little hope there! On the other hand, empathetic messaging communicates hope and inspiration.

Allow me to cite from an example of an inspirational message which was drafted for and rejected by a local PAB board.

“While the prospect of losing vision can seem terrifying, the fear that life will never be the same, here at the Agency we strive to give life back. We can teach you how to use your remaining vision more effectively and help you develop skills to perform activities of daily life, relying less on vision, whether in the home or on the job.”

Perhaps it speaks to our own colossal failure as an advocacy organization that we do not control the messaging about who and what we are. The world continues to view agencies for the blind as the “experts on the blind”, therefore accepting as fact, the narrative expressed in these agency appeals, portraying those with vision loss as pitiable, needy, and lost.

Again, I cite from an appeal letter I received last fall.
“You need to know how important you are to us and how grateful we are for you. You also need to know how needed you are because we are who you used to be. We were your mother, brother, sister, or daughter, and were fighting every day….” What if you lost who you were? What if you lost pretty much everything that defined you – your work, your hobbies, the activities you enjoy, and your sense of how you make the world a better place”. …”Please help us make sure that people like Mary never lose themselves forever.”

Let’s consider the similarities and differences in these appeal messages. The similarities are that both acknowledge that the onset of vision loss is devastating, but that there is a path forward. The overall difference, of course, is tone. The empathetic message views vision loss as a change in life circumstance and the agency as an enabler, “we strive to give life back,” while the sympathetic message assumes almost a loss of personhood, “What if you lost who you were?” The empathetic proposes a relationship of participation between the individual affected and the agency as an enabler. The sympathetic is all about the agency in a custodial role. Yes, in 2020, we are still talking custodial versus rehabilitative.

What of the message of the pitch, i.e., why give to the agency? Strip away the socially acceptable verbiage of the sympathetic appeal and it reads, “Blind, see how bad they have it. It could be you someday, so give.” Much of the motivation of the pitch is based on fear and guilt. Contrastingly, the empathetic appeal strives to inspire the potential donor to contribute to an effort towards self-sufficiency and a return to independence.

But you ask, in making this argument, aren’t you ignoring the most important point? Isn’t the crux of the issue the amount of dollars either of these appeals would bring in? I could respond that, as individuals with vision loss, our concern isn’t in the effectiveness or amount of money brought in by agency appeals, rather it is in the amount of damage their messaging leaves in their wake. But in fact, we do care that these agencies are successful in their fundraising efforts, because in theory more dollars mean more services. It is my contention, however, that through their long history of reliance on sympathetic messaging, subtly and sometimes not so subtly emphasizing the custodial over the rehabilitative, these agencies have poisoned their future path towards sustainable funding.

Of course, the only form of sustainable funding is fee for service, but the great majority of those services are based in meaningful rehabilitation, not custodial services.

But in the blindness services world, just exactly who will be the funder of fee for service? More about that in part 3. Let me leave you with this question. How has it come to pass that if you suffer a condition which seriously impairs your abilities, a stroke, a serious heart attack, there is no question that someone other than you will be paying for rehabilitative services, whether government or private health insurance? I can just imagine you remarking, forget it, you fool! The horse has not only left the barn on that one but is well out of sight. Maybe, but maybe not, if we, in partnership with providers, can change the message, join forces, and put in a great deal of work.

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