New address: 24 Farnsworth Street, Boston, MA 02210-1409.
“We arrive from many singular rooms” Ken Patton says (#443). We arrive with
an astounding breadth of experiences: joy and pain, accomplishment and failure. Our
lives are full with that which we’ve always wanted, and that which we never though we
could bear. We have come together with many different experiences of disabilities and
accessibility. Some of us here have a disability ourselves, either a temporary one due to
illness or accident, or a chronic condition. Some may have a friend with bi-polar disease,
or loved one, perhaps a child with learning disabilities. You may realize that the statistics
on the aging of the population has mo re consequences than just Social Security. I have
heard that for girls born in 1996, the year my daughter was born, there is a two out of
three chance that they will live to be 100 years old! Given the rate of age-related
disabilities, all of our experiences with disability will increase in the next few years. And,
given all this, many of us still come here today with a fear deep in our soul, that we will
be a person with a disability someday.
Of course, these issues of disability and accommodation are very difficult to begin
to consider. There are many different approaches to education around disabilities. Some
of us take the “temporarily able-bodied” approach, reminding all of us that we could be a
person with a disability someday. Some of us take the sympathy training approach, where
you are asked to sit in a wheelchair or move about with a blindfold on for a day, and take
note of the barriers to your daily activities. While I think many different approaches have
merit, I do not think that any one approach can really begin to address the scope of
disability and accessibility.
And so we have difficulty knowing where to begin. I think it is so hard for us not
because we are Unitarian Universalists, and UUs can’t agree on a single approach to
anything, for I think we make too much of our differences. Indeed, I believe we are far
from the only church community that has fifty-one opinions for any gathering of fifty.
No, I think this issue is so difficult because there are so few generalizations we can make
about disabilities. Every person with a disability has a specific set of circumstances.
Every person has specific accommodations they need, for our opinions are formed by our
personalities and experiences, as well as our physical realities. There is no way I can say
to you that this one change, this one accommodation will help lots of people. Every
person’s situation is unique. That leaves our congregations with a sense of overwhelmedness.
Where do we begin?
And it is hard for me personally to address disabilities in this format, in a sermon
and worship service. It is hard because I do not like my disability to take center stage. I
prefer to bring up my disability soon in the beginning of a relationship, explain my
situation, answer questions, and indicate my willingness to answer any more questions
that might come up. Then we can get the disability out of the way, and get on to the much
more interesting business of exploring this new relationship. However, it is important in
this setting that I keep my disability at center stage. This is precisely because I cannot
talk in generalities, only in specifics. I can only tell you what I think, and what is helpful
Having said all that, it is time I told you what my disability is, for I have the
sometimes fortune and sometimes misfortune of having a mostly hidden disability. I am
legally blind. I have a form of juvenile macular degeneration, a disease much more
common in its senior form. It was diagnosed when I was eight years old, and my vision
degenerated throughout high school, and stabilized about ten years ago. What it means
for me is that I have enough vision for very good mobility – I can get around quite well.
And I can go about my daily activities with very little indication that I have a visual
disability. However, I do not drive, do not read print, and do not make direct eye contact
at a certain distance, with people who may or may not know why I am not making eye
contact. To give you an example of the specific nature of disabilities, the large-print
hymnal published by the UUA will not really help me. Most people consider 18 or 25-
point type to be large print, but I use either 72 or 96-point type, depending on the
circumstances. I cannot ask the UUA to print a hymnal in 96-point type. I would only be
able to carry around about 10 hymns at a time if I did, and that would not help either the
UUA or me. Others with my disability or another type of visual disability have their own
preferences for type size and formatting, and so I cannot say what will be helpful to them.
I only know what helps me.
With all the variety of specific situations we need to think about when talking
about disabilities, it is no wonder that our congregations are overwhelmed. But I do think
that it is important that we at least begin to approach this issue. And so I am going to take
a risk, and say that I think there is perhaps one generalization I can make; one thing I can
say that will help most people with disabilities. That is a change in attitude.
I have noticed two basic responses to people with disabilities, responses that come
from our attitudes. The first response is what I call “pathos.” It is the pity response.
“Pathos” comes from the Greek meaning “suffering,” and many people believe that
people with disabilities must be suffering some if not all of the time. Many people believe
that we cannot handle our own problems, that we need help all of the time. And of
course, it is certainly tempting to ask for help all of the time, if you think you can get it.
None of us are above angling for pity. As Jan Austen’s character Mrs. Bennett says in
Pride and Prejudice: “Nobody can tell what I suffer! But it is always so. Those who do
not complain are never pitied.” Can any of us, whether able-bodied or disabled, really say
that we have never felt, in the depth of our soul, that “nobody knows the trouble I’ve
Of course, most of us try to outgrow these bouts of self-pity. But when others pity
us, self-pity can be hard to outgrow. And pity is a dangerous emotion. As the British
author John Galsworthy said in 1910, in the gendered language of the time: “When Man
evolved pity, he did a queer thing – deprived himself of the power of living life as it is
without wishing it to become something different.” If we spent all of our time wishing
our physical realities to be something different, we would indeed miss living.
I think that most people who react to people with disabilities with pity lack direct
experience, lack relationship, with a person with a disability. Pitiers in fact often try to
avoid people with disabilities. They may be the ones who say “of course it’s an important
issue, but we don’t have enough money,” or “of course it’s an important issue, but we
have other priorities…” Such attitudes ensure that they will not get direct experience with
a person with a disability, someone they may not feel comfortable around. Pity most
often happens from a distance.
The second reaction to persons with disabilities that I have noticed is a much
more close-up reaction. I call it the “amazing person” reaction. I had an Economics
teacher when I was a freshman or sophomore in college, and I remember sitting in her
office and discussing with her the fact that I had just gotten an “A” on her test. I
remember her looking across her desk at me with this admiring look on her face and
saying “You are amazing.” The problem with this response is, what do you say to that?
Doesn’t everyone like to be told they are amazing every now and then? I remember the
scene quite clearly, her desk, the look on her face, her exact words, “you are amazing.”
And I remember the ambivalence of my feelings at that moment. The fact was, all she
knew about me was that I had a visual disability, and that I got an A on her test. She
didn’t know the first amazing thing about me. Now, for those of you who think that
getting an A on an Econ test is amazing in and of itself, I have to admit that this was an
Econ 1 class. It was very basic, and one of the least challenging courses I have ever
taken. I believe my professor’s reactio n was an indulgence in sentimentality, a kind of
pathos as well. Oscar Wilde says in his play Lady Windymere’s Fan: “A sentimentalist,
my dear Darlington, is a man who sees an absurd value in everything, and doesn’t know
the market price of any single thing.” My Econ teacher saw an absurd value in anything I
did. And I’m sure she did not know the market price of that A on that exam.
There is a less dramatic form of the “amazing person” response that I believe I get
more than any other response. In fact, it was getting this reaction from a new friend a few
years ago that helped me decide on the approach I wanted to take in my general attitude
toward the non-disabled. I get this reaction so often it is appealing to respond to it to a
whole roomful of people at once. The response I get most often, after I’ve explained my
situation and answered questions, is this: “I could never do it.” Most people believe they
could never do what I do. And my reaction to that is that I don’t buy it. I just don’t
believe it. Aft er all, I didn’t choose to be a person with a disability. I’m pretty sure that if
I had to choose, I would choose to be fully sighted. Since I have this disability, my
choices really are to live, or not to live. Why would I choose not to live? And so I tell
them, and you, that if you did have this disability, you would do what you had to do to
accomplish what you want to accomplish, just like I do. No, of course, you would not
accomplish what I have accomplished; you are a different person than I am. If I have
accomplished much in the way of academics and ministry, it is because these things are
important to me. You have different interests and talents. But if you had my disability,
you’d find ways to accomplish those things that are most important to you. Don’t sell
yourself short. You could do this too.
This is the message I most want all of us to hear today. We all live from our
abilities. We all live with what is given to us, our own talents, and our own barriers. You
accomplish what is important to you because of your talents and in spite of your barriers.
It may take more time than you would like. I may take more help than you want to
accept. It may take more frustration than you think you can possibly bear. But if it is
really important, you do it. This is life. This is the life we all share together.
And so I invite you from pathos into partnership. Partnership means to me that I
can complain about those things that frustrate me, including my visual disability, and not
be in danger of being pitied. Partnership means that I can be proud of my
accomplishments, and not be in danger of being considered amazing just because I have a
visual disability. We all go through the same process of confronting our barriers and
using our talents and interests. And if, after you get to know me, you want to consider me
amazing, that’s fine with me. As long as I have the opportunity to get to know what is
amazing about you as well.
This is what happens in community. In community we get to know each other, we
get to know what is amazing, and what is not amazing about each other. We can find out
what will truly help, what changes we can make, so that we do not have to pity one
another for what cannot be changed. Marjorie Bowens-Wheatley has written in a reading
in our hymnal: “If, recognizing the interdependence of all life, we strive to build
community, the strength we gather will be our salvation.” We gather strength as we work
together to build community. We are saved by the combining of all our talents, to work
toward wholeness for all of us. Together, I believe we can accomplish unity. We have
much work to do to accomplish unity: work in accepting diversities in race, work in
accepting diversity of ways of loving, work in accepting diversities of personality, and
work in accepting diversities of ability. But we have a religious vision in our Association
to guide us. We have the vision of the interdependent web. Let us let that vision guide us
in our work.
We are gathered together in the mystery of this hour. As we are gathered together,
we are one strong body. Let us continue to gather together in the struggle; let us continue
to gather together in the power. Spirit, draw near. So may it be.
Copyright: The author has given Unitarian Universalist Association
member congregations permission to reprint this piece for use in public worship.
Any reprints must acknowledge the name of the author.
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Last updated on Tuesday, February 19, 2013.
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