THE READING

Disability: A Lament

Date: 10/05/2004

The Rev. Dr. Helen R. Betenbaugh

This prayer is excerpted from Betenbaugh’s and Marjorie Procter-Smith’s chapter in Eiesland and Saliers, Human Disability and the Service of God: Reassessing Religious Practice, Abingdon Press, 1998.


Creating God:

You made the sky,
clouds of purest white,
with rays of fuschia and orange and magenta at sunset,
and faces dear with the smiles of loved ones.
Today thousands were born without sight;
thousands more lost theirs because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?

You made the finest sands,
snow to crunch under our boots,
fields of green grass,
cool on the soles of our bare feet on a hot summer’s day,
and streams to hike alongside with loved ones.
Today thousands were born without feet or legs,
or with legs so twisted or spastic that they would never walk on them;
thousands more lost the use of theirs because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?

You made the song of the birds,
the sound of waves lapping against the shore,
the warning wail of the siren,
music, the laughter of children,
and the tender words of loved ones.
Today thousands were born deaf;
thousands more lost their hearing because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?


You made minds,
quick to invent the wheel,
to discover electricity,
to find a way to journey to the Moon,
and to fashion words of poetry for loved ones.
Today thousands were born with mental retardation,
with developmental or learning disabilities;
thousands more were rendered "incompetent", "vegetables,"
because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?

Your hands pushed back the waters
to reveal the dry land,
And fashioned us from clay.
You made our hands to sculpt,
to move with grace like Pavlova or Baryshnikov,
and to caress the bodies of loved ones.
Today thousands were born with no hands or arms,
or with short stumps for arms and flippers where hands should be;
thousands more lost the use of their hands and arms
because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?

You made us to sing,
to shout,
to laugh,
to communicate through important words,
and to speak from our hearts to the hearts of loved ones.
Today thousands were born without speech,
or with speech so difficult that it scarce can be uttered or understood;
thousands more lost the use of their voices
because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?

You made a world of love,
of life shared in community,
of choices and decisions,
safe boundaries,
and relationships with loved ones.
Today thousands were born with autism
or other emotional illnesses;
thousands more entered the fog of emotional illness
because of abuse or injury or disease.
And it was evening and morning of another day.
Did you call this Good?

You breathed into us ruach, the breath of life.
You filled the world with the sweet perfumes of flowers.
You made us to breathe the tangy aromas of spices,
the scents of budding trees,
the incense arising from prayers for our loved ones.
You made us to taste the bread and the wine,
Body and Blood of your - and our - Loved One.
Today thousands were born so allergic that they cannot dare smell,
dreading the reaction to what they might suffer if they taste;
thousands more were made allergic
because of injury or disease.
And it was evening and morning of another day.
Did you call this Good?

Where and when can we hold you accountable?
Where are bodies assembled that are guaranteed by the union label?
Where is the card proudly claiming "Packaged for you by Angel 33?"
Where is Quality Control? Customer Service?
Where do we get exchanges?
Where demand parts that work, that hold up under stress,
that permit us to have choices in living our lives?
WE call this Good.

Must we expect less of You than we do of each other?

Hear our prayer.

Where is the mercy you promised us?
Do you remember the Covenant?
Or were these hollow,
mere platitudes?

Does the rainbow mean something to you
or has it become an innocuous icon
for kindergarten teachers and Hallmark cards?

Jeremiah and the Psalmist wailed,
Job raged,
and Jesus wept.
Has God hardened God’s own heart?

Hear our prayer.


Are our prayers less valid because we cannot see the candles flickering on the altar?
Do you ignore us if we cannot kneel to implore you to listen?
Do you choose not to hear us if we cannot hear the Sanctus bell?
Do you demand that we bring a high IQ to this discussion?
Do you judge us insincere if we have no hands to fold in prayer?
Do you get bored and turn away if we speak slowly, or not at all?
Do you sneer at us if we cannot speak to you rationally, in our "right minds?"
Do you find us unholy if we cannot tolerate the Bread and the Wine?

What, for Christ’s sake, would it take for you to hear us?

We are yours, yet we see you distant, irresponsible.
We see you washing your hands of us
just as Pilate washed his hands of your Son.

We see angels taken over by pop culture.
Where are the angels you promised you would give charge over us?
Instead of cute pins on our shoulders
we want angels of mercy.
Mercy to end the unremitting pain,
to stop the infernal, eternal twitching and jerking,
to loose the tongue,
mercy to still the flailing arm,
to open the ears,
to quicken the brain,
mercy to relax the spasm,
to restore the eyes,
to walk and leap and dance,
mercy to touch,
and to feed ourselves with hands of grace,
to extend a greeting to the stranger,
to be free to breathe and taste,
and to soothe the anguished mind.

We want mercy.
Mercy to end Duschenne muscular dystrophy, Down Syndrome, Tourette Syndrome,
ALL Syndromes.
Mercy to halt Huntington’s chorea and multiple sclerosis.
Mercy to end birth defects. All of them.
Mercy to stop strokes, and blinding diabetes.
Mercy for healing all in body, mind and spirit.
Balm in Gilead.
Unction.
Now.

Here is our prayer.

Hear our prayer.
We are weary of trying to name Paul’s "thorn in the flesh."
We want to know why you left it there.
We are sick of celebrating Annie Sullivan.
We want to know why Helen Keller became Blind, Deaf, and Mute.

We are angry at fights about whether or not a President
can be shown "wheelchair bound."
We want to know why you didn’t heal FDR from his polio
so he wasn’t.
Don’t tell us Christopher Reeve is a "true" Superman now.
We want to know why you didn’t put him back on his horse.

At last, again our prayer.

Hear our prayer.

Mercy for healing all in body, mind and spirit.
Balm in Gilead.
Unction.
Now.

THE SERMON

         Each year at our talent auction, I offer the opportunity to choose the topic of a sermon I will deliver. I do not offer the right of planning out the sermon – I may go somewhere with it the purchaser would not have chosen, as some of them can testify – only the topic is for sale.

         Rhonda Best was the high bidder last year. When we met to discuss the sermon, she offered me a couple of subjects from which to select. I chose to go with “persons with disabilities,” because it is a subject, I am embarrassed to admit, that I have never addressed directly in the pulpit in my 39 years in the ministry.

[churches unresponsive to disabilities]

         I am not alone in that failure. It is a common one. The vast majority of ministers and churches fail to address the subject of disability – or when they do, it might be better if they had not. There are religious people who still believe that disabilities are the marks of God’s displeasure – that a child’s disability is a punishment for sins committed by the parents; or that if the disabled person had enough faith, they would be “cured” of their disability; or that a disability is a test of our faith.

         It has been shown that, for a variety of reasons, persons with disabilities are less likely than the presently-able segment of the population to attend church. Some of their absence can be explained by architectural barriers: many churches physically exclude persons with disabilities. Sometimes the exclusion is programmatic: the disabled cannot see or hear or otherwise fully participate in services. Sometimes it is an aura of unwelcomeness: either theologically (blaming the victims), or discomfort on the part of the presently-abled with having to deal with the presence of those who are disabled.

         It is interesting to note that the federal “Americans with Disabilities” act, excluded churches from having to comply with access regulations: you couldn’t burden a church with having to be open to all people – heaven forbid! During the debate on the ADA, an assistant attorney general noted that “It is often easier for a person with a disability to get a beer at a bar than to enter a church to pray.”

         The fact is that nearly one fifth of the people in the United States, at any given time, have significant disabilities. Most of us, if we live long enough, will personally experience disability – it may be in mobility, or sight, or hearing, emotions, or intellectual function. Some suggest that it is the fear of acknowledging our own vulnerability that leads many people to want to keep persons with disabilities out of sight.

[the Accessible Congregations Campaign]

         The National Organization on Disability has a program to address the barriers to full participation by persons with disabilities in religious communities: it is called the Accessible Congregations Campaign. The theme of the campaign is “It All Begins in the Heart.” The basis of the campaign is the recognition of our first Unitarian Universalist principle, “The inherent worth and dignity of every person,” although it is expressed, “all people, with and without disabilities, are created in the image of God.” The goal is “to open hearts, minds, and doors.”

An accessible congregation acknowledges that it has barriers (both physical and attitudinal) to the full participation of people with disabilities and makes a commitment to removing them.

The program asserts “Congregations need not be perfect. They do need to make the commitment to action.” To be certified, all a congregation needs to do is to make a commitment to “using the gifts and talents of people with disabilities in worship, service, study and leadership.”

         The Accessible Congregations Campaign, not surprisingly, offers a checklist for a congregation to use in self-examination as to where it stands on the journey toward inclusion. There are fifteen stages in that journey, and on each one, the congregation can rate itself “not started,” “getting started,” “well on our way,” [or] “we’re there.”

         For the last couple of years, I have been stressing in my Fusion invitation for people to visit, that ours is a very accessible church. We have a great deal of which to be proud. On the fifteen item list, I judge that we can say “we’re there” on five; “Well on the way,” for six; and “not started” for only four. Perhaps this sermon will result in our “getting started” on some of those.

[the checklist]

         “What are these items?” you ask. [Please ask.]

         1.      The first step in the journey of a congregation is awareness of the existence of barriers to the full participation of “children or adults with physical, sensory or mental disabilities from accessing a full life of faith (including worship, study, service and leadership.) I believe we have that one nailed.

         2.      The second is advocacy within the congregation for the welcoming of people with disabilities to full participation. We’re there.

         3.      Third is discussions about the ability of the congregation to meet the challenges. This involves the inevitable questioning of whether we have enough members with disabilities to justify the expense of becoming accessible. We’ve had those discussions. The only time I’ve ever really “lost it” with a committee was when the Memorials Committee (several years ago when none of the present members were there) after agreeing that we needed to make the proposed memorial patio accessible, decided that it was not worth the added expense for the few people to whom it applied. The committee was overruled, and we constructed our accessible walk to the patio. We had that discussion also around the need for an elevator to make both levels fully accessible, and again our commitment to accessibility prevailed. We have indeed had those discussions.

         4.      Fourth is “plans.” That involves “invitation fo people with disabilities to join as full members, action plans to remove barriers, and formal commitment made to welcome people with disabilities.” We’re well on our way, but we have never undertaken such a formal commitment. We made just such a commitment with people who are gay, lesbian, bisexual or transgendered when a study found that it did not suffice to say “everyone is welcome.” My reading in preparation for this sermon suggests that a similar need exists in regard to persons with disabilities.

         5.      Accommodations is fifth, and I do believe we excel in that one. We have accessible parking and assisted doors, we rebuilt our rest rooms, added an elevator, we have assisted hearing equipment (although I am newly aware from my reading of a better system that can be picked up by hearing aids), we have large print orders of service, we purchased a braille hymnal when someone who could not see was visiting several years ago. Before we had our elevator, we moved church school classes upstairs both so someone with a disability could teach, and for the sake of participants with disabilities. We have, in the church school, readily arranged for special aides to assist the full participation of kids with disabilities.

         6.      Sixth is a welcoming environment which includes “Appreciation for the changes being made and friendships extended to people with disabilities and their family members by increasing numbers within the congregation.” I believe we still have room to grow in this one, although we’re well on our way.

         7.      Seventh is hurdles, and I may have slightly overstated our accomplishments by stating “we’re there.” It includes all of the things I listed under accommodations, but it also includes a ramp that would make this platform accessible.

         8.      I suggested that we are well on our way, but have not

         9.      yet arrived at the promised land in regard to inclusion, new

         10.     consciousness of attitudinal barriers, and transformation, to

         11.      which I will return in a moment.

         12.     I suggested we have not started, or barely started: in local

         13.     outreach beyond our congregation, advocacy, outreach to

         14.     other congregations, and sharing our story, although our

         15.      housing of the Easter Seals Childrens’ Development Center’s Day Care, is a matter of local advocacy which should not be ignored.

         As I said earlier, I believe there is much of which we can be justly proud.

[room for growth]

         At the same time, speaking for myself, and I trust for at least some of you, there is room for growth in the attitudinal areas. The Rev. Dr. Nancy Lane, a minister with severe disabilities who consults with churches addressing these issues, offers a list of behaviors that a healthy religious community would reflect:

         ●        negative attitudes disappear as people embrace and practice a liberatory theology whereby all people are welcomed and included as equals.

         ●        stereotyping is non-existent. In listening to the stories of people with disabilities, the community comes to know us as people with real feelings, needs, desires, and abilities.

         ●        Diversity is more desirable than homogeneity.

         ●        Injustice and oppression come to end as all barriers are removed and non-disabled people are held accountable for the sins of discrimination, prejudice, exclusion, violence and marginalization.

         ●        Spiritual growth deepens in the community as they learn the significance of recognizing humanity’s interdependence.

         ●        Attitudes of pity, condescension and charity are replaced with a spirituality of compassion; no one is objectified and there is mutuality in giving and receiving.

         ●        Inclusion is a reality and not a resolution or mission statement confined to paper and routinely ignored. . . .

         ●        We will be invited to tell the truth about our lives and experiences.

         ●        Compassion and respect will accept that we cannot do some things, while celebrating with us things we can do.

         ●        People will welcome our friendship and enter into lasting relationships with us so that we can move out of exclusion and isolation.

[not in touch]

         Until I accepted the challenge of this sermon, I was not really in touch with the dimensions of exclusion from normal life that people with disabilities experience. I did not appreciate the degree to which the presence of a disability is often taken by communities as a license or a reason to dismiss the full humanity of people. One out of five Americans has a disability. How many of them do we encounter in our daily lives? If any of those disabilities is serious, we have a tendency to exclude. We do not regularly encounter many people with severe limitations in hearing, sight, mobility, intellectual development, or emotional health. I still hear people, form time to time, ridiculing the requires of the Americans with Disabilities Act, or the “political correctness” of referring to “persons with disabilities” instead of “handicapped people.” It matters a great deal how we define people with our language, because that impacts the ways in which we see them.

         I was startled a couple of summers ago when I heard a colleague with red hair refer in a sermon to how excluded she had felt because of her hair. It was her experience that she was treated differently because of it, and in many ways dismissed by people. “Oh, well you know how red heads are.”

         Starting with that, think of what it must be like to be hearing impaired, or unable to see, or to speak, or to move about without assistance. I fear that most of us cannot begin to imagine what it is like, although if we live long enough, we may experience a rude awakening. Some of the expense to making public facilities accessible may come to seem less frivolous.

[mainstreaming]

         There is a lot of talk about the inconvenience and expense of “mainstreaming” children with disabilities. From the outside it can seem to be less meaningful than it does from the inside. It has to do with early experiences of being accepted or rejected as a part of the human community. When CDC decided to offer nursery care for children with disabilities, they realized that it was important for them to be in a setting that included children without disabilities. At present 20% of their kids have identified disabilities – they are exploring why more families with children with disabilities are not calling upon their services.

         Until they moved away, our church family included Diana Warlop, then a teenager with Down syndrome. Our member, Tim Rowley, is the staff person at Guilford High School who worked to have Diana and other kids with disabilities included in the student body. There were/are kids who signed up especially to be linked with them in certain classes.

         My daughter Hilary was gifted with the experience of having a girl with Down Syndrome in her class at the Montessori Magnet for several years. The whole class was attentive to her special needs, but also to her legitimate place among them.

[life boat ethics]

         We are shaped by our experiences. Our experiences of humanity are more shallow when they fail to include people who have special needs. Our materialistic society tends to grant differential personhood on the basis of one’s productivity. So-called “lifeboat ethics” suggests that people who are not materially productive are taking up space that should be saved for those who can produce. This is an ethic that flies counter to our Unitarian Universalist affirmation of the inherent worth and dignity of every person. “Inherent” means you don’t have to prove you “deserve” a seat on the boat. It is, however, a reality that Unitarians were prominent in the eugenics movement of the early 20^th century which sought to control human “breeding” to eliminate from the gene pool those who were “less perfect.” Sterilizations were conducted to prevent those whose traits were deemed less desirable from reproducing. Not surprisingly, those who were sterilized included disproportionate numbers of racial minorities and those who were poor. It was the Nazi’s who carried eugenics to the logical extreme.

[designer babies]

         Today we approach it more gently with the experiments in “designer babies.” Everyone wants to have babies just like my grandchildren, who just left this morning. [That’s partly a joke.]

         In truth, Jim Spelman is every bit as proud, and should be, of his grandson Leo who was the subject of an article recently in the Register Star. Jim brought Leo to church to show him off a couple of weeks ago. Leo was born in England, and his father delayed in bringing him to the United States because of the depth of the programs that are available for persons with disabilities in England. Ours is a less humane nation.

         Nancy Lane asserts :

While many theologies address classism, sexism, racism, heterosexism (and homophobia), none of them speak to handicapism. “Handicapism” refers to societal and institutional oppression and stereotyping, including negative attitudes. This omission allows theology to continue setting us apart and treating us as different, unequal, and invisible. It remains the task of theology to hear and include the voices of people with disabilities in the struggle against oppression.

[Lament]

         I chose to read Helen Bettenbaugh’s “Lament” because of the clarity with which it communicates the anguish of those who have been marginalized and condescended to. People with disabilities often fail to share the realities of their experiences with the presently-abled population because they fear, not without reason, that we will withdraw from their pain, or dismiss them as complainers, or respond with pity rather than respect.

         Deborah Creamer, a minister with disabilities who is a PhD. candidate at the Iliff School of Theology, has suggested a theological perspective she calls the “limitness” model in which:

our limits need not (and perhaps out not) be seen as negative, but rather that they are an important part of being human. . . . Limitness . . . offers us a way to think about the limits of each person and what such limits may enable or make difficult. . . . The limitness model is important because it highlights the fact that we all experience limits, that these limits differ, and that these limits are accepted, rejected, accentuated, complicated, degraded, and lived in many different ways. This perspective of limitation neither universalizes, relativizes, nor minimizes individual experiences, but instead proposes an area of common ground in the midst of the recognition of exceptional incarnated and environmental differences, a place for conversations to begin.

[not all equal]

         One of my all time favorites among the sermons I’ve delivered is the one about “The Tyranny of Normalcy” which is built on Kurt Vonnegut’s short story about Harrison Bergeron. In that story, the United States has a “Handicapper General” whose job it is to make everyone the same – no one can be more attractive or intelligent or graceful or musical or anything than anyone else, and anyone who is, is given handicaps to wear that make them equal. That is a living hell.

         Responsible advocates for people who are disabled are not suggesting that all people are the same; on the contrary, they are asserting that we are called upon to acknowledge human diversity. We are not all the same, we do not all have the same abilities, but the presence of disabilities does not make one less human, does not mean that one has nothing to offer. Deborah Creamer suggests that sometimes our limits become socially defined as disabling due to barriers in the social environment. It is what we make of them, and the consequences that we impose that make the disability more disabling than it needs to be.

[the religious community]

         Nancy Lane points out:

The religious community must change its attitude toward people with disabilities or they will continue to be devalued. Devalued people are treated badly; they are rejected, abused, and considered unworthy for time and friendship, thus causing further marginalization. They become objects of pity, subjects of charity, and treated in ways which diminish their dignity, growth, competence, health, finances, and their quality of life. There are too many who continue to regard us as brave or courageous at one end, or worthy of pity at the other end,. Neither extreme allows for understanding or acceptance of us as human beings in the same struggle. . . . When we marginalize, exclude or distance ourselves from others, we narrow our own boundaries and foreshorten our own vision.

[an opportunity for growth]

         It is not just for the sake of others that we are called to become more conscious of the ways in which we respond to people with disabilities: it is a test of our own commitment to the worth and dignity of every person – it is a test of the depth of our own humanity.

         As I asserted earlier, I believe we can be very proud of our accomplishments in regard to making our church a place that welcomes people of varying levels of ability, but, again speaking for myself, I know I have not always been as aware of my own attitudes as I wish I had been, nor have I always been the advocate that I might have been for the rights of those who have different limits than I.

         I thank Rhonda for the opportunity she gave me to increase my awareness by suggesting this topic. I knew in my head, but my reading has deepened my awareness and I cannot return to the level of unawareness I had before. This is not to claim that I have attained full enlightenment, but I am not where I was. If I have adequately delivered on what she purchased, perhaps you too have been, to some degree, changed – perhaps you will see your responsibility and our responsibility as a church differently. Perhaps we will consider becoming committed to being a more truly accessible congregation – that our attitudes may be as inclusive of all people as our building, that we will look even more closely at putting into practice our affirmation of the worth and dignity of all people.