Author: stevekuusisto

“Beloved, let us love one another, because love is from God; everyone who loves is born of God and knows God. …Beloved, since God loved us so much, we also ought to love one another.  No one has ever seen God; if we love one another, God lives in us, and his love is perfected in us.”  I John 4:7, 11-12

Let me be clear that when I say “the church” I do not mean a particular denomination. I ought to say “organized religion” but I want the picture of a church—a church without ramps since religious denominations are not required to meet the standards of the Americans with Disabilities Act. This is because Jesus said: And ye shall send away the cripples lest they defile your baskets…

No one knows what Jesus meant by “baskets” as hermeneutic interpretation also suggests he may have said biscuits but in either case the picture isn’t pretty. How Jesus must have loathed it when the cripples licked his biscuits and then put them back! (That’s what cripples do you know—they lick things intemperately.)     

Churches enjoy their exemption from the ADA because religious leaders argued successfully before Congress that houses of worship should be considered as “private clubs” which is why you frequently see parishioners wearing “Members Only” jackets. (Yes, the Lutheran jacket is in tasteful earth tones.)

For Jesus said: We shall have no grimacers or limpers before the Lord…

He also said: Ye shall live with perfect people and lock out the droolers and moaners and those who walk with sticks…

There are indeed lots of progressive movements that seek to address the inaccessibility of places of worship. The National Catholic Partnership on Disability describes its mission this way:

Rooted in Gospel values that affirm the dignity of every person, the National Catholic Partnership on Disability (NCPD) works collaboratively to ensure meaningful participation of people with disabilities in all aspects of the life of the Church and society.

The Dallas Theological Seminary offers an excellent course entitled “Theology of Suffering, Disability & the Church” -–a course that includes people with disabilities as lecturers.

Professor Jeff McNair has a terrific blog Disabled Christianity.

I am a fan of the Episcopal Disability Network.  

We like the Calvin College video interview with Christopher Smit who, among many other things is a scholar with an interest in disability and film. 

We like the Disability Ministries page of the Evangelical Lutheran Church. 

We are fond of Julie Clawson’s blog One Hand Clapping.

We are enormously fond of Wheelie cATHOLIC’s blog.

There are many other progressive individuals and groups who are working to ensure that congregations offer full inclusion for people with disabilities—work that reflects the understanding that people with disabilities have gifts which they they can share.

But twenty years after the passage of the ADA this work is still insufficient. In 2011 churches of all kinds still lag far behind the rest of the nation when it comes to disability access and what might be called “inclusion consciousness”.

The irony is of course nearly unsupportable. 

For Jesus said: Build me a private club and turn away the deformed for they ruin all contemplation…

Private clubs indeed.

Leviticus 21:16-23 "The LORD said to Moses, "Say to Aaron: ‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; no man with a crippled foot or hand, or who is hunchbacked or dwarfed, or who has any eye defect, or who has festering or running sores or damaged testicles. No descendant of Aaron the priest who has any defect is to come near to present the offerings made to the LORD by fire. He has a defect; he must not come near to offer the food of his God. He may eat the most holy food of his God, as well as the holy food; yet because of his defect, he must not go near the curtain or approach the altar, and so desecrate my sanctuary. I am the LORD, who makes them holy."

Woe unto those who have defects!

The “private club” status of churches is an outgrowth or extension of the baleful ideas one finds in the Old Testament. Like my friend Nancy Mairs I refuse to believe that my God is a “Handicapper General”.   

Still, physical perfection remains a dominant trope in organized religion. The ableism of the enterprise has much to do with the transitive images of healing that surround Jesus. Many congregations get Jesus’ relationship to disability and to people with disabilities all wrong. (We like Sharon Post’s article “The Ministry of Jesus to People with Disabilities”.

Sharon Post points out that while Jesus healed people with disabilities he really much more interested in their souls. Amen.

Me? I’m just the grandson of a Finnish Lutheran minister. Some years ago I became an Episcopalian though I’m quite a back slider—I often don’t go to church and let’s be clear that I don’t feel good about it. But I can still hear the bells from my gray forest.

But to badly paraphrase Groucho, I wouldn’t join any private club that would offer me membership. The jacket would itch. Boy! Would it itch!

We like this prayer of inclusion from The National Catholic Partnership on Disability

Loving God,

You make each living person in your image
…Your gift of love and commitment to the human race
…A seed to build a community of interdependence and respect for all life

As we celebrate the U.S. bishops’ proclamation of welcome and inclusion,
open our hearts to their words
Commit us to their proclamation that “There can be no separate Church for people with disabilities. We are one flock.”

Guide our hands to build access and welcome
Guide our minds to understand the power and wisdom of human vulnerability
Guide our actions to create parish communities open to the gifts of each individual
Give us courage to stand up to the forces willing to destroy life because they fear disability or
make judgments about its “quality.”
Give us understanding that your body is incomplete if people are left behind
Give us an appreciation of the role we must play in spreading your good news to all we meet

We praise you Lord for all of your good gifts
We thank you fo
r those pioneers who have wo
rked tirelessly
to carry out the bishops’ prophetic vision of 1978

We give thanks for loving parents who welcome and nurture their children
We appreciate all those living with disabilities who contribute their time and talents even in the
face of obstacles or rejection

Guide us always Lord in your way

Amen

We hope that the presence of inhospitable churches will end in these times.

S.K.

When I think of my twin brother I imagine I’m living his life for him. I do not imagine myself as a “stand in” for him but rather as a living vehicle for his secret life. I move through the gray, half dead winter with William’s light inside. If I try and explain this I seem suffused with sentimentality and so I never say a thing. Why am I saying something today? What green force has turned in my hands that I should reveal I’m the outward form of his unaccountable life?

We know our thoughts—their patterns—are like musical compositions. The piano stays silent in a concerto and then it returns, its dark notes merging with every stone in the church. How the music has tricked us! The alien mind of Rachmaninoff has swept through the lead gray water of your own brain. The trick of music is that we don’t mind the possession or more rightly “being possessed”. In a period only a few seconds or minutes long we’ll submit to another woman’s or man’s neurological reception of cold moonlight. Oh and we will be lonesome when this extra-corporeal suspension occurs. We are always alone when we feel the mind of another though the trick of imagination is to say this is intimacy. (See Walt Whitman…) We’re talking about an occasion that mimics the loneliness of twins—twins long separated—whether by death or a cultural calamity. There is no loneliness like feeling the twin inside. But stranger still, it’s an ache that’s overloaded with life like a boat that’s too heavy. My twin brother and I are low in the water.

One summer years ago I felt a dragonfly land on my wrist. I saw that my brother’s presence was a light touch in just this way. I did not imagine that the dragonfly was him. I knew that he was inside me. I understood his delicacy. I saw that he was relative to the breeze. He remains to this day like the stitching of sun that falls unaccountably through the branches and I cannot predict the marriage of breeze and light and mind that reveals the pregnant sense that I am carrying him—my twin brother, my identical twin. It would be foolish for me to pretend I understand how he arises. Almost as foolish as saying he’s within me.

Meanwhile the sun makes the broken statues seem to rise behind the house where I am staying.

So I say to my brother the beauty of miracles exists. I have chosen to say this. The dragonfly’s wings turn invisible against the earth.

S.K.

February 8, 2011

Excerpt provided by InclusionDaily:

COLUMBUS, OHIO– [Excerpt] A settlement agreement has been reached with the Franklin County Sheriff’s Office in Columbus, Ohio, over the use of Conducted Energy Devices (CEDs), or electrically charged weapons commonly referred to by the brand name "TASER," in its two jails, the Franklin County Corrections Centers, the Department of Justice announced today. The settlement was filed as a joint motion in the U.S. District Court for the Southern District of Ohio.

On Nov. 3, 2010, the United States filed a motion to intervene in a case alleging that the Franklin County Sheriff’s Office engaged in a policy and practice of excessive and abusive use of CEDs against detainees and inmates. The case, which is represented by the Ohio Legal Rights Service, Ohio’s protection and advocacy system for people with disabilities, includes "all persons who . . . are or will be placed in the custody of the Franklin County Sheriff’s Office at the Franklin County Corrections Centers."

The United States moved to join in the case under the provision of to the Violent Crime Control and Law Enforcement Act of 1994, and filed its own complaint to ensure the uniform national interpretation and application of civil rights laws pertaining to excessive force by law enforcement, an area in which the Justice Department has special expertise. The district court granted the United States’ motion to join the matter on Dec. 14, 2010.

The court-enforceable agreement not only establishes significant safeguards against the abusive use of CEDs against detainees and inmates, but also ensures that those who disobey deputies’ orders in a non-violent manner will not be stunned by the electrically charged weapons. The agreement also requires changes to the suicide risk-assessment policies that will restrict the practice of electrically stunning individuals who show resistance to being forcibly changed into suicide safety gowns.

Entire press release:
Justice Department Settles with Franklin County Sheriff’s Office Over Use of Tasers in County Jails
http://www.justice.gov/opa/pr/2011/February/11-crt-153.html

I believe that Ira Sokol’s post about assistive technology for students with disabilities and the discrimination against them by school administrators is the best piece of blogging about ableism I’ve seen in some time. Sokol, whose blog is called SpedEdChange has titled his post “Beyond Disability” and in it he does a marvelous job of demonstrating how all technologies are assistive technologies (especially for people that imagine they don’t have physical problems) and in turn the bias against students reading with accommodating technology is both silly and yep, driven by moneyed interests.   

What bias, you say? You will need to read Ira’s excellent piece for a fuller treatment but here’s the deal: technologies that put people with disabilities on the educational playing field are still keenly distrusted by ableist types who imagine that some kind of cheating is going on. We don’t have to descend into a lecture about Social Darwinism but the general idea is the old canard that accommodations in the classroom may give a special ed kid an unfair advantage. Sokol does a good job of showing how the outrage against Oscar Pistorius is the same outrage directed at learning disabled children who use educational software. I have been the recipient of these discriminatory ideas all my life. Once, in graduate school a professor told me that if I needed extra time to read for his seminar I didn’t belong in his class. And the fights my mother had to undertake to get extra time for me when I took the SAT exams back in 1977 were both epic and humiliating. (Remember the dark days before the ADA?) Nowadays the rights of blind people to use AT are generally understood though the application and inclusion of that technology in classrooms is still a hard fight.

In baseball the catcher’s mitt is an accommodation. Does he have an unfair advantage? The player who is thrown out trying to score might think so. But if you think this analogy is invidious, think again. The catcher’s mitt has extra padding to absorb the velocity of thrown pitches. That’s it’s advantage. The disadvantage (as any catcher will tell you) is that the glove has no pocket. A good catcher knows how to hold the ball in the glove. A good catcher has the strongest hands of any player on the field. He has adapted to his accommodation.

Going to public schools in the 1960’s my only accommodation was having people read to me. My version of the catcher’s hands was to develop a capacity to remember what I was hearing. Good for me. I did what I had to do. All kids with disabilities take what they have and use it to the best of their abilities. The ultimate ableist would say that I had a special advantage over kids who were reading the print off a page because I had extra time. I had someone read to me—once, and once only. Yipper! I had one hell of an advantage. And of course this reactionary confusion is the point. We don’t know what education means. We don’t know what individuality means. Our current system is adapted from the Victorian idea that public ed will prepare a child to work in the merchant classes. Reading, writing, and arithmetic are essential to being a shop keeper. In the years after World War II (with the advent of the G.I. Bill) a new expectation came of age in America: people from the lower classes felt that higher education was possible and within their grasp. We all know that higher education requires you to work hard. This is one of its signature qualities. Hard cerebral work will help to make a woman or man a critical thinker. But all too many educators still don’t know what the process of work—raw, tough, persistent mentation—really means.    

Imagine that!

There are many educators who still don’t know what educational work—acquisition of knowledge “means”. In large part this is because education departments at colleges and universities have often failed to imagine the educational possibilities that can be realized beyond standardization. And lest you imagine that this is a philosophical problem I would counter by saying it’s a problem of capital. One must imagine that disability is a form of hunger. One must think of food as a reasonable accommodation. One must think of food as a human right. Like my baseball analogy the comparison will appear invidious until one thinks of the environment of learning. When I use my assistive technology I am working in a different relationship to the page—think of this as my intellectual metabolism if you will. I am taking in and breaking down information according to the capacities of my body. We scarcely know what the body means when we discuss the acquisition of educational skills. I guarantee you that most education departments are not talking about it.

Denying students the proper technology and learning methods amounts to denying them food. One thinks of Paolo Freire who observed that as a child in poverty he couldn’t learn: “I didn’t understand anything because of my hunger. I wasn’t dumb. It wasn’t lack of interest. My social condition didn’t allow me to have an education. Experience showed me once again the relationship between social class and knowledge"

Concerning hunger there is much more to be said. Apart from its “tenor” as analogy, hunger, (real hunger) also disproportionately impedes students with disabilities. LD kids need proper breakfasts and then, yes they need appropriate learning tools. The latter are not guaranteed in these United States. I remember attending a school board meeting in Iowa City two years ago, when, during a discussion of budget cuts, an administrator announced that they could cut special ed teachers in the district because, “lo and behold” the administration had very reliable information suggesting there would be no special ed kids in the district next year! (Bring your own smelling salts, please.)

(In case you’re wondering, I told that administrator that he should be ashamed of himself. This in turn led to considerable eye rolling from the
school board members. Imagin
e! Being lectured by a blind man with a dog!)

The fact is that schools and even colleges are all too often incapable of seeing disability education as a human right—as an equal right. This is because all educators involved in budget decisions cannot imagine disability accommodations as being a matter of critical pedagogy.  Critical pedagogy, among other things, asks us to openly inquire about the origins and sustaining dynamics of learning structures. In other words it examines the relationship between teaching and learning. Or as “Deep Throat” would say: “Follow the money.”

It costs money to put assistive technology and special ed teachers in the mainstream classroom. It’s far easier to deride accommodations as representing an unfair advantage to LD students than it is to recognize the connections between disability and the social mechanisms that create and recreate it.

Read Ira’s post.

S.K.

White House Monthly Disability Call

In order to help keep you more informed, we are hosting monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the federal government.

This month’s topic will be on the President’s budget as it relates to people with disabilities.

This call is off the record and not for press purposes.

We strongly urge and ask that you distribute this email broadly to your networks and list serves so that anyone who wants to participate and learn about the President’s budget can do so.

Our next call will be Tuesday, February 15 at 1:00 PM Eastern.

The conference call information is below.

Dial in for listeners: United States: (800) 288-8974

Title: White House Disability Call (use instead of code)

Date of Call: 02/15/2011

Start Time: 1:00 PM Eastern

For live captioning, at time of call, log onto:
http://www.fedrcc.us//Enter.aspx?EventID=1710748&CustomerID=321

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please email sfeuerstein@who.eop.gov and provide your name, email address, city, state and organization if applicable.

Again, please distribute widely.
The White House · 1600 Pennsylvania Avenue, NW · Washington DC 20500 · 202-456-1111

By Andrea Scarpino

My mother has always wanted me to rest more than I think necessary. When I was little, this led to epic battles over naps and bedtime, with me insisting even as I was clearly falling asleep that I was only closing my eyes. To cajole me into any semblance of an afternoon nap, she had to lie down in the bed with me, and even then I only agreed because I loved the quiet games we would play as she tried to keep me still for an hour or two.

As I grew up, I had many friends who would speak in glowing terms of spending a weekend or university break in bed, of longing to devote an entire Saturday just to sleep. I thought they were crazy—and still do, in all honesty. Unless I am deathly ill—and even then—sleeping through a perfectly lovely Saturday sounds to me like punishment.

Which is not to say that I’m a model of productivity, that 100% of every waking moment is spent doing something great/important/wonderful. I have wasted much more time than I would ever admit watching marathon sessions of Intervention on hulu. And 30 Rock. And (sigh) Jessica Simpson’s The Real Price of Beauty. But when I’m bored, exhausted, feeling down, need to escape, I don’t turn to sleep. I sleep because eventually, my body shuts down. Not because I want to.

This weekend, I was supposed to present at the annual conference of the Association of Writers and Writing Programs (AWP). I’ve been submitting panel proposals to AWP for years without success, but this year, I finally received an acceptance. Now that I live in Marquette, however, I have very limited airline access, and most available flights fly through Chicago. Whose airport just received 21 inches of snow. First, my Wednesday flight was cancelled and rescheduled to Thursday, then my Thursday flight was cancelled entirely. I tried to find another flight that would get me to AWP in time for my presentation, but everything was booked.

So instead of presenting this weekend, instead of wandering long rows of publishers in the book fair, instead of hearing some of the most famous writers in the US speak, I’m forced to stay home. There is nothing I can do to do to make a flight appear. When I told my mother, who had been incredibly excited about my presentation (even demanding I straighten my hair for the occasion!), her initial devastation began to lesson as she realized I could spend the weekend resting instead. Maybe that’s really what you needed, Andrea, she said. Maybe it’s better for you to have this time resting.

Almost every time I see her these days, she tells me I look tired and she’s taken to buying me various rejuvenating creams and lotions in an attempt to help me look more rested than she thinks I really am. But while I don’t foresee myself spending the weekend napping, I am beginning to think that having a little break won’t be the worst thing to happen. I do feel tired, run down. I do feel like a little rest could serve me well. Maybe I won’t even set the alarm this weekend. Maybe I’ll see what trashy marathons hulu has in store for me.

Poet and essayist Andrea Scarpino lives in Marquette, Michigan. She is a regular contributor to POTB. You can visit her at www.andreascarpino.com

It is said that the great Swedish tenor didn’t care much for language study. He invents some French in this rendition of Gounod’s famous aria. So move over Christina Aquilera. It’s all in the high C!

S.K.

Then Jesus took the chicken and divided it in half and said: “Eat for this is my moral perfidy.” 

The ongoing Chick-fil-A flap – which has gay rights groups blasting the restaurant chain for donating food to an anti-gay marriage group – may be a fleeting controversy for a privately held company that is more accustomed to fiercely loyal patrons and generally positive press coverage.

But Lake Lambert, author of the book Spirituality Inc., says the flap may be a sign of more turbulence ahead for Chick-fil-A as it attempts to hold onto its conservative Christian business culture while expanding its chain beyond the Bible Belt.

See: http://religion.blogs.cnn.com/2011/02/04/chick-fil-a-controversy-shines-light-on-restaurants-christian-dna/

S.K.

I too have been abused by Delta airlines. You can read my observations below this article about Carrie Salberg’s recent humiliation at the hands of Delta airlines employees.

Airline Tells Ventilator User To Get Off Plane
(Star Tribune)
February 4, 2011
MINNEAPOLIS, MINNESOTA– [Excerpt provided by Inclusion Daily Express] While her nurses were stowing the 100 pounds of medical equipment she needs to travel with, Carrie Salberg was given a startling order: Get off the plane.

Salberg, who has muscular dystrophy, was never told why she couldn’t use the ventilator she requires to breathe on the Jan. 13 flight that was supposed to carry her back home to the Twin Cities from New Orleans. In fact, just a month before the flight, Delta Air Lines said her equipment met the company’s requirements.

Salberg’s story illustrates the confusing landscape of federal regulations and airline policies that confront people with disabilities when they travel. The Air Carrier Access Act, established in 1986, prohibits discrimination against someone with disabilities during air travel, provided any necessary medical equipment is approved according to in-flight rules.

But disabled travelers are increasingly complaining about their rights being violated.

Entire article:
Airline bumps disabled traveler
http://www.startribune.com/investigators/115245289.html

**

I was boarding a Delta flight in Denver last month when the flight attendant stopped me at the door and told me my guide dog didn’t have a special scarf. Now you have to picture this: I was pre-boarding the plane with a dog wearing a harness that has the words “Guiding Eyes for the Blind” on it, and yes, Virginia, I even had a formal ID card for the dog. But the flight attendant was stuck in her own tape loop. “Every service dog has a scarf,” she explained. “Your dog doesn’t have a scarf!”  “Well, actually,” I said, “actually guide dogs don’t wear blue scarves. They have leather harnesses and—“ “Now don’t tell me!” she interrupted. “My uncle was blind and his dog had a blue scarf!”

Since passengers were coming down the jet way behind me I didn’t have time to explain the use of prejudicial rhetorical devices. I simply said: “I’ve flown hundreds of thousands of miles with my guide dog and no one has ever told me I needed a blue scarf to board a flight.”

“You got any paper work?” she said.

“What paper work?” I asked.

“Well we need paper work for that dog to come on this plane!”

“No one has ever asked me for paper work when boarding a flight. What are you talking about?”

“There could be somebody on this plane with dry ice. It could kill your dog!”

“So dry ice guy trumps my right to get on this plane?”

At this point a second flight attendant came from the rear of the plane and showed me my seat.

But flight attendant number one wasn’t quite done. She began complaining loudly to the gate agent. Where was the paper work? That dog can’t come on the plane without paper work. An embarrassing argument was occurring just a few feet away from me while passengers fumbled and pushed their fat luggage into the overhead bins.

At this point I piped up and said loudly that as a passenger with a guide dog I felt completely unwelcome on this flight. You could have heard a pin drop. Then flight attendant number one shouted to the gate agent: “Did you hear what he said?” I suspected that I was going to be thrown off the flight. It was touch and go. Then there was some mumbling between the agent and the attendant. And then the crisis passed. The door was closed. The flight was going to go with me aboard.

This was a Delta flight in name only insofar as the operating airline was a subcontractor. The more subcontracting there is in the commercial airline industry the more cost cutting there is in terms of staff training. Every airline passenger knows that this in turn leads to diminished service in all kinds of areas. But the situation is especially revealing for passengers who have disabilities. Insufficient training of airline employees can lead to humiliation of passengers with disabilities and yes, to outright violations of their rights.

Would it help if Delta airlines apologized to me? Maybe. But the proper thing for the industry to do is to hire seasoned travelers who have disabilities to train their employees in disability etiquette and the rules of the road.

S.K.