Category: Uncategorized

When I was a kid and my dad was working in Albany, New York we used to go to Joe’s which in those days was the most authentic New York style delicatessen in the city. You could get your smorgasbord “to go” or “eat in” for indeed many of the New York legislators and their pals would occupy the banquettes and tables and hunch over the pasta Alfredo or the unbelievable roast beef sandwiches. They used to offer a sandwich they called “The Londoner” which was the rarest roast beef piled high on first rate Jewish rye with horseradish and Russian dressing, tomatoes, and by god I’ve searched all my days ever since for a sandwich that could match it and I’ve never found   it–not at the Carnegie Deli or the Stage Deli in New York,not at Katzinger’s Deli in Columbus, Ohio (a famous German town), not in London or Poughkeepsie. And so I say let others bemoan the fall from grace of esteemed poets of yore, let others chatter about the good old days when men were men and women were glad of it, or encourage your neighbors to admit they miss Richard Nixon–I don’t give a tinker’s damn for these sentimental preoccupations for my personal regret is that America no longer produces the sandwiches of bygone days and perhaps, just perhaps this is why we no longer have bi-partisanship in the legislative body politic. I’m just sayin’. 

 

S.K.

This is the first time I’ve ever written a blog post while flying. I’m heading back to Iowa from the Tucson Festival of the Book, Nira my guide dog is stretched out at my feet. I’ve just had the obligatory can of Coke and we’re about 200 miles away from Cedar Rapids. If there’s a theme to this mid-flight post its that sometimes I feel lucky. I have had the opportunity these past two days to meet all kinds of people who love books. I met several teenagers from the Arizona School for the Deaf and Blind. I heard some blind kids singing rock and roll. I heard my friend the poet and nonfiction writer Peggy Shumaker read alongside the poet C.K. Williams. I had dinner with many of the business leaders who helped to make this Tucson festival possible and I made many new friends. My own reading was also a Q. And A. Opportunity for people who wanted to talk about everything from assistive technology to literature and poetry to the very real posssibility that a cure for blindness may be coming in our lifetimes. It was a good journey. In the Dallas airport while riding the electric cart to my connecting flight I met my old friend and former neighbor, the poet Billy Collins who was also at the Tucson event. We had a lovely 10 minute conversation that felt richer and deeper than its duration would suggest.

The Finnish poet Pentti Saarikoski once said: “I want to be the kind of poet who can build houses for people.” As writers we hope to build communities. I was lucky these past couple of days to see many who feel the same way. Though you’d scarcely know it from watching TV news, this is still a great nation. And trust me it ain’t the Coca-Cola that put me in this state of mind. Our flight is nearing Cedar Rapids so I’m going to sign off. Let spring come with new books and fresh ideas for all who would have them.

S.K.

I am in Tucson, Arizona for the Tucson Festival of Books which is being hosted at the University of Arizona’s campus and is being sponsored by a remarkable coalition of Tucson business leaders and educators. There is something here for everybody whether you are a kid who loves adventure or fantasy stories, an adult in love with Noir, (notice that I capitalize Noir?) or perhaps you’re in love with contemporary poetry. If you are a reader of this blog and you’re within easy distance of Tucson you should drive or pogo stick your way over to the fine events taking place today and tomorrow.

For my part and speaking as an Iowan, I’m just amazed to be walking around in a place where there are birds and daily drafts of warm wind. I haven’t experienced temperatures like this since September. My guide dog Nira is all a quiver with the news from her nose.

One of the things I most admire about the festival is that its organizers understood from their earliest brain storming sessions that this should be not only a celebration of writing but a progressive vehicle for encouraging reading and literacy in a part of the country where functional illiteracy is very high. IN short: the folks behind this festival hope to turn children “on” to books. What could be better?

On my way here I met a 10 year old boy named Ethan who was sitting behind me on my American Airlines flight from Cedar Rapids, Iowa to Dallas. About twenty minutes into the flight Ethan tapped me on the shoulder. He was both sweet and shy and he was taking an optimistic step out of his comfort zone. I could hear his mom encouraging him from her seat just behind me.

“Are you Stephen Kuusisto?” he asked.

“Why yes I am.” I said.

“Well, my name is Ethan and I read your book Planet of the Blind.”

As you can well imagine I was fair amazed. Ethan then went on to tell me that just like me he was born prematurely.

Now how cool is that?

Kids reading books. Kids gaining strength from books.

You just can’t top that.

But Ethan did top it.

His fifth grade social studies teacher is in fact my good friend Lorraine Whittington.

I think Ethan was more astonished to discover that I know “Mrs. Whit” even more than he was when he saw me seated in the row in front of him.

Mrs. Whit is very cool.

I will never forget that airplane conversation.

Let’s all do our darndest to promote books and more books for kids and more kids.

I’m surely hoping that the Tucson Festival of Books becomes an annual event.

S.K.

 

Dave Reynolds over at Inclusion Daily Express posts the following story:

 

Institution Workers Video-Recorded Fights After Goading Residents To Brawl
By Dave Reynolds, Inclusion Daily Express
March 10, 2009

CORPUS CHRISTI, TEXAS–Several residents of Corpus Christi State School were forced to fight each other in the middle of the night, while shift workers laughed and video-recorded the brawls, according to local police.

“I’ve been in police work for 30 years, and I’ve never seen something like this,” said Corpus Christi Police Captain Tim Wilson. “These workers are exploiting them for their own entertainment.”

Wilson is investigating the allegations along with the Office of Inspector General of Texas Health and Human Services.

Wilson’s office received a cell phone last week from a citizen that said it was found along a road. The phone reportedly has at least 20 separate videos dating from 2007 to just last month, showing young men with intellectual disabilities engaged in fighting similar to that in the movie “Fight Club”.

“The fighting entails pushing, wrestling and some shoving,” Wilson explained.

Wilson, who has refused to release the video to the public, said many of the men are just seen standing around in the facility’s ‘day room’, at first.

“They are being more goaded into it. There’s a lot of voices on there from workers . . . saying, ‘Look at that, ha ha’ . . . laughing, stuff like that.”

While none of the men are recorded crying or appearing injured in the videos, none of the 10 or so state employees on the videos are seen stopping the fighting either.

“I’ve heard of isolated incidents before,” Wilson said, “but what’s most appalling is that it’s obvious this is organized.”

Wilson added that it was not yet clear whether employees gambled on the outcome of the fights, or whether the images were uploaded to the Internet.

The Dallas Morning News reported Tuesday that at least eight employees have been suspended pending the investigation. Two others have been fired, and two have resigned.

Wilson said that he expects to file criminal charges by the end of the week.

Responding to the news, state officials immediately halted admissions to Corpus Christi State School while the investigation is underway.

Governor Rick Perry’s office also ordered video cameras to be installed immediately at all 13 state-run institutions that house people with intellectual disabilities, and that more security officers, overnight supervisors, and surveillance camera monitors be placed in the facilities.

In the fiscal year that ended last August, the Corpus Christi facility had nearly 1,000 allegations of abuse, neglect or mistreatment. Sixty of those were confirmed.

The allegations came to light just as the state Senate unanimously approved a measure to provide extra protections for several thousands of people housed in Texas institutions.

A report by the U.S. Department of Justice revealed in December that residents at Texas institutions are often victims of abuse, neglect and inadequate medical treatment — and that at least 53 died just within the past year from inadequate medical care. Lack of adequate staffing has been blamed for much of the trouble.

For years, several disability rights groups have called for some or all Texas institutions to be shut down, and the residents to be moved to homes in the community.

Related:
Police: Disabled forced to fight in Corpus Christi school (Houston Chronicle)
http://www.chron.com/disp/story.mpl/front/6303104.html
Corpus Christi State School investigated after ‘fight club’ videos of residents found
http://www.inclusiondaily.com/news/2009/red/0310d.htm

Death to Dust: What Happens to Dead Bodies, by Kenneth Iserson

From the book jacket:

 

“A tome about every conceivable aspect of being dead, as a guide for medical professionals and an aid for people in general to decide what to have done with their bodies. Iserson himself hopes to convince people to donate them to research, but he is not pushy about it. He explores how death is determined, autopsies are done, people are cryonically preserved, heads are shrunk, corpses are transported; and why people rob graves, use coffins, cremate bodies, bury people prematurely, and use corpses in research and training. No gruesome photographs. Totally documented content with multiple footnotes, references, glossary, appendices. Available from Galen Press Ltd., PO Box 64400, Tucson, AZ 85728-4400. Annotation copyright by Book News, Inc., Portland, OR”

**

As my friend Al Petrucci used to say: “Steve, don’t ever ever eat the nuts from that little dish on the bar, filthy people put their hands in there.” Al was correct about that and I’ll now amend his maxim: “Don’t ever read a book that’s advertised by the publisher as a “tome” unless its by Edgar Poe.”

 

Cut to logic: Why would medical professionals need a guide about what happens to dead bodies? I mean, heck, my sister is a doctor and I recall that on one of her first days of medical school they presented her with her very own cadaver which turned out to be the corpse of a woman who resembled somebody’s granddmother  save that she was blue. I also seem to recall that my sister’s cadaverstill had the name tag on its toe–a mistake of course, and my poor sister had to cut open poor Edith.

Presumably this book is for the guy who swabs the hospital’s floors who has always wanted to know what happens to those poor people who check in but don’t check out.

Just donate your body for research and skip this one.

 

S.K.

 

I am an Episcopalian and lately I’ve been away from church. Its hard to get out in the winter. And yet I am proud of the progressive stance that Episcopalians have taken when it comes to disability and inclusion.

The Episcopal Accessibility Network has lots of useful information about disability and offers great links on everything from traveling with disabilities to accessibility guidelines for congregations. This is a great website if you’re looking for information about any number of topics from the Episcopal Church itself to locating accessible books about spiritual life. One of the things that really caught my eye was  their list of Things You Can Do to Make Your Church Accessible:

 

MORE THAN FIFTY WAYS TO MAKE YOUR PARISH ACCESSIBLE WITH LITTLE OR NO COST

1. Use your copier to produce large-print copies of the prayer book or other materials used in worship. (Large print is 18 point and should be produced on paper which is white or off-white and produces good contrast with the type.)

2. Consider replacing fixed pews with moveable pews or chairs so that people with disabilities may be seated with the community and participate fully.

3. Cut the ends of several pews so that wheelchair users can sit with their friends and families rather than being segregated in the back or front of the worship space.

4. If there are steps into your chancel or sanctuary, consider having a communion station on the floor of the nave. This will permit young children, those who are frail or elderly, and person with disabilities to receive the Sacrament in the same way the rest of the congregation receives.

5. Involve people with disabilities in the planning of all architectural modifications.

6. Think about converting two side by side bathrooms into one accessible unisex bathroom. Allow room enough for wheelchairs to turn around. Leave transfer space on both sides of the toilet. Make sure the toile paper dispenser is close enough for easy reach by the person using the toilet.

Make sure that sinks can be easily accessed by a wheelchair user, and do not forget to lower towel and soap dispensers so that they can be easily reached.

7. Provide a paper cup dispenser near your water fountain. This will transform an inaccessible fountain into one easily accessible to wheelchair users.

8. If any wheelchair users volunteer in your office, consider raising the height of desks and tables so that they wheelchair can fit under these surfaces.

9. Suggest that your hearing-impaired parishioners sit toward the front of the nave so that they can easily see the preacher and lectors. Ask the preacher and lectors to speak clearly and slowly, looking frequently at the congregation. Make copies of the sermon available before the service as well as copies of the lessons to be read. People who are hearing-impaired will find these materials especially helpful.

10. Install long-handled hardware which is easier for everyone to use, especially those who have impaired hand function.

11 Survey your sound system to ensure that it meets the needs of those with high frequency sound loss. Consider purchasing a sound system with individual hearing devise that better meets the needs of those with hearing loss.

12. Apply brightly colored, textured strips at the top of all stairs. These strips alert people with limited vision that they are approaching stairs. People who are carrying things which block their vision will also appreciate this notice.

13. After every service, take the altar flowers and service leaflets to those who are shut-in or hospitalized.

14. Provide transportation to church for those who are elderly or without transportation.

15. Maintain regular communication with those who are unable to attend services or other parish events. This allows these people to continue to feel a part of the community, and it allows the community to monitor those persons ‘ well being.

16. Include the children of the parish in visits to nursing homes. Most elders enjoy short visits form youngsters.

17. Discover sources of large print or taped books, magazines and Bibles. Share this information with older parishioners whose vision is failing and may not yet be acquainted with these resources.

18. Offer a Christian Education day in which participants explore what life as a person with a disability is like. Ask your parishioners who have disabilities to share their experiences. Explore ways in which life as a person with a disability can be improved and how your parishioners with disabilities can feel more included in the life of the congregation.

19. Invite outside speakers to the parish to talk about issues and needs of persons with disabilities.

20. Show one or more of the excellent video tapes which are available about disability concerns. Prepare questions for discussion following the viewing. In interest is expressed, make plans to address the issues which still separate people with disabilities from the larger community of the church and society.

21. Plan an adult education segment to discuss the non-architectural barriers to inclusion.

22. Remove snow and ice promptly from all sidewalks and parking-lots. During the fall months, make sure that slippery leaves are also removed.

23. Survey present church lighting to ensure that the wattage is high enough and that the placement of light fixtures ensures maximum visibility.

24. Make yourselves knowledgeable about the needs of persons with invisible disabilities such as diabetes, epilepsy, high blood pressure, mental illness, etc. In an adult education session, share this knowledge about these disabilities.

25. Develop support groups for persons with disabilities such as stroke, diabetes, epilepsy, mental illness, etc.

26. Hold all community activities in areas accessible to everyone.

27. Encourage one to one relationships between persons who are elderly and youth and young couples.

28. Enlist the expertise of your parishioners who are carpenters, plumbers, contractors, teachers, social workers, nurses, etc. to accomplish simple accessibility and disability awareness tasks. For example, if you are creating an accessible bathroom, raising the height of the toilet, moving the toilet paper roll closer to the toilet, etc. are easily accomplished by parishioners who are handy.

29. Develop a section of disability resources in your parish library.

30. Look for educational opportunities about disability concerns in your community. Gather several interested parishioners and parish leaders to attend programs. Publicize these events in your bulletins and newsletters.

31. Encourage parishioners to designate memorial gifts for accessibility projects.

32. Organize a beep baseball game, inviting one of the organized teams of blind people to play a team of your own blindfolded parishioners.

33. Visit accessible churches in your area, noting especially the non-architectural ways these churches demonstrate their accessibility and inclusion.

34. Consult local nursing homes to ascertain whether your congregation might invite their residents to become members of your congregation.

35. Share your facilities with organizations which serve people with disabilities.

36. Consider getting involved in congregate dining, meals on wheels, or your own feeding program for those who are in need. Join other parishes in the area in this effort.

37. Set aside a separate bulletin board to display material concerning your own accessibility projects.

38. Explore ways of including people with disabilities in the education and ministry as well as the worship of your congregation.

39. Explore ways of working with other congregations and denominations on projects related to disability access and ministry.

40. Suggest that your parishioners volunteer their time at a day care center, rehabilitation facility or hospital as a way of coming to know persons with disabilities better.

41. If you have persons who are blind or visually impaired in you
r congregation, install sign
age in Braille or raised letters.

42. If you have persons in your congregation who are deaf or severely hearing-impaired, install a fire alarm which is light cued. Before installing this kind of alarm, however, make sure that there are no persons with epilepsy in the congregation since this light alarm may cause seizures for them.

43. In an educational program or in a sermon, explore the differences between “healing” (wholeness) and “cure”. All people can receive God’s healing grace. Not all of us will be cured.

44. Because two-thirds of working-age people with disabilities are unemployed (even though they are able to work and want to do so) and because many members of your congregation are employers make sure they are knowledgeable about the issues around employment of persons who are disabled both from the point of view of the employer and the point of view of those who have disabilities.

45. Convene a team of parishioners who are willing to call your legislators on behalf of legislation about transportation and housing. Join with other churches in your community on this project.

46. Survey your neighborhood to ascertain whether there are unmet needs among those who are elderly, home-bound or disabled.

47. Many activities such as skiing, roller skating and camping can be enjoyed by people who are disabled especially when they are partnered with someone who is temporarily able-bodied. Encourage your parishioners to look for the fun and fulfillment in these activities.

48. Educate your congregation about environmental illnesses. Survey your cleaning supplies being mindful of those with environmental sensitivities. Encourage everyone to curtail the wearing of perfumes and aftershave as well. For some, the use of incense will be a problem. At the very least, when incense is to be used, notify the congregation beforehand.

49. Designate your church campus as a non-smoking area.

50. Let your diocese and your council of churches know about your concern that people with disabilities must be welcomed into the ministry of the church.

51. Set aside parking spaces in your parking lot or in front of your church for people with disabilities. Mark these spaces with an appropriate sign.

52. Provide appropriate Christian Education curricula for children with disabilities. Most children with disabilities can be mainstreamed. When this seems inappropriate, find material suitable to the child’s abilities.

53. Encourage families with disabled children to bring their children to church. Encourage the members of the congregation to be welcoming, even if a child is not always quiet during the service. Welcome children with disabilities to participate in the celebration of the Sacraments of Baptism, Eucharist and Confirmation.

54. Accept the God-given gifts that people with disabilities bring to the community.

55. Partner with neighboring parishes to provide disability programming for the community.

56. Establish a peer mentoring program between your able-bodied young people and young people who are disabled.

 

Kudos to the Episcopal Accessibility Network!

 

S.K.

Not so long ago I wrote on this blog about the disgraceful discrimination against a woman with a guide dog who wished to take a computer class offered by the Iowa Department for the Blind. The story is terrible for lots of reasons but perhaps the most critical aspect of the matter is that a group of blind people decided that a guide dog would interfere with the process of teaching blind people how to use computers outfitted with software for the blind. A local court in Iowa bought this specious storybelieving that the Iowa Department for the Blind was within their rights to declare a guide dog a “visual aid” that would somehow screw up their pedagogy. There’s nothing good about this story.

The Iowa Department for the Blind believes that if a person is legally blind but possesses some residual vision they must be blindfolded if they’re going to get training from their agency. This is anarrow matter of interpretation and a view which is not widely shared by progressives in the field of visual impairment and rehabilitation.

In effect the position of the blindfold squad is that if you have a small window of remaining vision you will probably lose it and so by making people wear blindfolds and leave their guide dogs at the door they’re just helping people face the inevitable loss of their fractional sight. Forget the fact that residual vision nowadays is very stable and that today’s ophthalmologists and vision researchers are better able than ever to help people hang on to their remaining vision. The Luddite principle of the Iowa Department for the Blind is that all legally blind people should be forced to undergo blindfold training as if this is a gift. Who can spell Schadenfreude? Who can say “Let’s make more blind people!” “Be like me!” “If you’re not exactly like me then we will take your dog away!” I kid you not. This is shallow and malevolent and illegal and nasty. I remain apalled by the fact that state money in Iowa was spent to keep a  woman with a guide dog from taking a computer class.

Now the same organization that has the most influence on the Iowa Department for the Blind is outraged because a blind man in Boston was prevented from touring the aircraft  carrier John F. Kennedy. I agree that the Navy should have had the means to assist a visually impaired person tour the ship. But isn’t it interesting to hear Dr. Mark Mauer, the President of the National Federation of the Blind opine to the press that there’s no room for discrimination against where the blind can go? Mauer said:”If we allow the claim we cannot visit an aircraft carrier . . . we will next be told that we cannot visit a restaurant or a school or a park.”

Apparently its okay to deny access to computer training to a blind woman with a guide dog but this aircraft carrier business is a real outrage.

 

The point of course is that the NFB is one organization among many that represent the blind and visually impaired and they take contrarian positions when it suits them. They fought the American Council of the Blind when it sought (successfully) to get the U.S. Treasury to issue accessible paper currency. When it suits them the NFB  will seek to prevent  access. Just take the  story of an Iowa woman and her guide dog. They have a legal right to enter any facility that’s open to the public.  In short the NFB is not as they claim “the voice of the blind  though we can all agree they have a voice. It is too bad they are exceptionalists. I think blind people in the United States need all the help they can get. 

 

S.K.

Iowa senator says case show flaws in labor laws
http://www.chron.com/disp/story.mpl/ap/tx/6301825.html

Related:

Information request holds up Atalissa probe, officials say (Des Moines Register)
http://www.inclusiondaily.com/news/2009/red/0309b.htm

For more on this story visit Inclusion Daily Express.

 

S.K.

I will be reading on Saturday, March 14 in Tucson alongside hundreds of poets, fiction writers, nonfictionists, crime writers, cook bookers, nature writers, children’s book authors–you name the category and I think you’ll find them all at the Tucson Festival of Books.  This promises to be an exciting event and I look forward both to the readings and talks and also to the opportunity to make new friends in the great circle of book lovers.

 

S.K.

“I like a view but I like to sit with my back turned to it.”

–Gertrude Stein, The Autobiography of Alice B. Toklas

Let’s suppose that Alice who is really Gertrude but not really Gertrude for such would be a matter of conjecture , let’s suppose that before turning her back on the view, whatever it was, she, Alice, saw something and for the sake of argument we shall say that she witnessed the tawny haycocks looming in the field above the sea.

Then she turned away. She leaned toward a lit match with her cigar. The fine, topiary haycocks were in her head alongside Matisse and swathes of fabric and the delight she must have experienced was thatof “in loco cogito”–not an idea nor a memory nor a photograph in mind, but the freedom to take from the words “haycock” “field” “ocean” whatever she fancied.

I like a view but always have my blind eye to it. I like a view but always read it in translation. I get my news from strangers who purport to see and whose neuro-plasticity of language is fair    or excellent or doubtful. I take up their words like a bundle of dry brush and carry them away to the house.

But this you see is all that anyone can do. Alice saw the field and turned away and immediately it was another thing, a transmogrification of a preliminary impression.

I listen to what others say about the field. They’re crazy. Inarticulate or better… But they didn’t see the field without the bulky garments of languages and imprinted associations and so they’re at a disadvantage when finally they turn away and talk about what they imagine they’ve seen.

“How do you describe the world if you can’t see it?” someone asks. “Because I love language and I’m not a journalist,” I say. “There are animal instincts in the field,” I say. “They’re like amethysts, and that’s how the world of living things knows who is out there.”

 

S.K.